I can't tell you how much I appreciate the staff of Trialnet. They are so kind and willing to listen and explain. I wasn't excited about taking Kaitlyn back to be retested, but I'm also usually one to follow doctor's orders, especially as far as my kids are concerned. They asked if I'd like to talk to the Doctor, and I really did. He called yesterday (for free!) and patiently answered my questions. The primary advantage to a diagnosis before insulin would be if she were to enroll in a study. What if one of the drugs does halt the disease progression? She would so benefit from halting the disease right now. However, there is only one available, and the Lord has been good to give me no doubt that it isn't for us. The Doctor addressed some of my safety concerns, but some of it comes down to a gut level decision, and he respected that. He told me I could just watch her, and it is fine to wait and bring her back when Andrew goes again on March 1. I explained that I was a math person and needed quantifying of "watch her". We are going to check 2-3 times a week after the highest carb load meal of the day. If we start to see sporadic high numbers, we will switch to 4 times a day - before each meal and 2 hours after dinner. Obviously, if she had symptoms or if the numbers go up, I'll know to call. I want to support her as soon as she needs insulin so that she can keep a strong honeymoon going through these growing years. I'm not waiting because I'm in denial. It just wasn't in her best interest to go back now.
The Doctor wasn't excited about my supplements. He didn't think they'd harm her though. The DHA had even been tested by Trialnet & given to mothers prenatally to see if it impacted T1D in the children. It didn't. I suppose that was supposed to have discouraged me, but I heard, "Even the doctors thought there might be something to it!" And I didn't hear any concern that it wasn't safe. He did say to be careful because you can't vouch for the purity in supplements. I then talked to a pharmacist at a local natural drug store. She helped me pick out some DHA/EPA with extra Vitamin D for Kaitlyn. We started her on that last night and the Glucocare this morning. We will continue with a multivitamin. I didn't get warm vibes from either the doctor or the pharmacist on the ATP, so for now, this is all we are going to do.
Kaitlyn says she's fine, and I believe her. When this first happened, I knew I was obsessing because I would go to bed at peace, but wake up feeling like I'd been working hard and dreaming about diabetes. One of those days, Kaitlyn told me of one her dreams, which was more of a happy working out of school issues. She is her same happy self. We are still hoping insulin and highs and lows are a long way off. She told me awhile ago that she didn't want diabetes, but that she wasn't afraid of it. Later, she asked, "Mom, what if I do get diabetes?" Pause. "We'll probably both cry. Then we'll take care of it. You'll check your blood sugar and take insulin just like Andrew. God will still be God, and you will still be you. We'll be okay." She seemed content. She checked her blood sugar twice today. We did a fasting because she woke up with a sore throat. BG 90. After breakfast and a shower, she said, "Mom, I feel weak. Could I be low from the Glucocare?" BG 86. She felt fine the rest of the day. She tried testing on her pinky today, something Andrew has never done. She went and told him that he should really try it because she thought it hurt less. If nothing else, I'm thankful for that she has had normal blood sugars for six years longer than Andrew. I still hope it will be even more.
Friday, December 30, 2011
Tuesday, December 27, 2011
Diagram of Type 1 Diabetes Progression
 |
| This diagram demonstrates the pre-clinical diabetes stage that Kaitlyn is in. She is losing beta cells, but not to the point that she isn't functioning well. Beta cell function levels a bit at diagnosis, but usually bottoms out at virtually 0% insulin prodution. New diagnosis studies try to treat patients & maintain their beta cells. Prevention trials try to find patients in the pre-clinical stage. Prevention trials are new, because before Trialnet and similar trials, we didn't know how to find patients in the pre-clinical stage. This graph is from a RETAIN website. It is a drug that may be available to Kaitlyn in a few months, so I'm trying to learn more about it. http://www.retainstudy.org/new-onset-type-1-diabetes |
Switching Insulins for Andrew
I was so busy updating on Kaitlyn, that I never filled you in on Andrew's appointment! Thankfully, his A1c had dropped back down, and we are happy with it.
While at Kaitlyn's test, they visited with an adult using Apidra in her pump. Apidra is a newer fast-acting insulin that works faster than the Novolog we've been using. It helps minimize the after meal spikes because it works faster and clears the system sooner. Gene asked about it and got samples of Humalog and Apidra. Humalog has a similar action time to Novolog, but it doesn't have the "tail" that Novolog has for Andrew. The tail is extra insulin action that comes just before the insulin works out of his system. It has always been a problem in the morning. If we give Andrew enough insulin to keep his breakfast numbers in check, he will bottom out at 10:30, when the insulin "should" be out of his system. We work around it with a snack, lowering basal, or just being content that his number looks good at lunch. However, with a cgm, it is hard to be content with a 90 at breakfast and a 90 at lunch when you see that he hit 300 in between. I'm not that excited about the Humalog though, because I've heard that it crystallizes in pumps easier than Novolog and necessitates changing sites every two days instead of every three. Apidra though, I think could be great. Apidra works quickly and doesn't have a tail. Andrew's nurse wanted us to watch him very carefully if we switch him to Apidra, because he will come down very fast. If the pump site fails, he will also run out of insulin quickly. That isn't a frequent issue, but it will be important to replace insulin as soon as we notice a site came out.
When we went to change his site on Friday, we needed a new bottle of insulin. Andrew wanted to try Apidra, but I said no. I didn't want that level of stress with a new faster acting insulin over Christmas. So, we opened the Humalog. His numbers over Christmas were horrible. It isn't really fair to the Humalog. It was Christmas. But, his numbers were so bad! By yesterday morning, he wasn't getting ketones, but he was high and corrections weren't bringing him down. He hadn't had breakfast, so it wasn't food. Some people say they just need more insulin on Humalog. Since I was already suspicous of day 3 on Humalog, we just changed the site. We decided to try the Apidra since we can watch him this week. Two hours later, he dropped from 434 to 56. Yes, Apidra works! It made us a little nervous since we didn't know how much farther he would drop. He responded just fine. I did stay up late last night. He was right around 80 for several hours, and I wanted to make sure he didn't drop any lower. I finally turned his basal down and went to bed around 1:00. Yes, the break is the perfect time to experiment with insulins! I can't say his numbers are perfect, but I'm pretty confident that I'm going to like Apidra!
While at Kaitlyn's test, they visited with an adult using Apidra in her pump. Apidra is a newer fast-acting insulin that works faster than the Novolog we've been using. It helps minimize the after meal spikes because it works faster and clears the system sooner. Gene asked about it and got samples of Humalog and Apidra. Humalog has a similar action time to Novolog, but it doesn't have the "tail" that Novolog has for Andrew. The tail is extra insulin action that comes just before the insulin works out of his system. It has always been a problem in the morning. If we give Andrew enough insulin to keep his breakfast numbers in check, he will bottom out at 10:30, when the insulin "should" be out of his system. We work around it with a snack, lowering basal, or just being content that his number looks good at lunch. However, with a cgm, it is hard to be content with a 90 at breakfast and a 90 at lunch when you see that he hit 300 in between. I'm not that excited about the Humalog though, because I've heard that it crystallizes in pumps easier than Novolog and necessitates changing sites every two days instead of every three. Apidra though, I think could be great. Apidra works quickly and doesn't have a tail. Andrew's nurse wanted us to watch him very carefully if we switch him to Apidra, because he will come down very fast. If the pump site fails, he will also run out of insulin quickly. That isn't a frequent issue, but it will be important to replace insulin as soon as we notice a site came out.
When we went to change his site on Friday, we needed a new bottle of insulin. Andrew wanted to try Apidra, but I said no. I didn't want that level of stress with a new faster acting insulin over Christmas. So, we opened the Humalog. His numbers over Christmas were horrible. It isn't really fair to the Humalog. It was Christmas. But, his numbers were so bad! By yesterday morning, he wasn't getting ketones, but he was high and corrections weren't bringing him down. He hadn't had breakfast, so it wasn't food. Some people say they just need more insulin on Humalog. Since I was already suspicous of day 3 on Humalog, we just changed the site. We decided to try the Apidra since we can watch him this week. Two hours later, he dropped from 434 to 56. Yes, Apidra works! It made us a little nervous since we didn't know how much farther he would drop. He responded just fine. I did stay up late last night. He was right around 80 for several hours, and I wanted to make sure he didn't drop any lower. I finally turned his basal down and went to bed around 1:00. Yes, the break is the perfect time to experiment with insulins! I can't say his numbers are perfect, but I'm pretty confident that I'm going to like Apidra!
Thursday, December 22, 2011
Looking At Supplements
We are starting to pray about supplements that we can safely put Kaitlyn on to help support her pancreas and extend this honeymoon time. We had good results with the Glucocare for Andrew, and I've considered putting Kaitlyn on that. I talked to Vanderbilt & they were okay with us trying some supplements and maybe even testing her a little later. Since the 16th is right before her birthday, I'm thinking a different diagnosis date might be good. I was willing to start whatever testing regimen they would recommend if she come in right away and get diagnosed. They thought spot checking, but watch for symptoms would be fine. They also set up for the doctor to call me next week and talk to me further. He is very knowledgeable and very easy to talk to, so I'm very happy about that.
When I mentioned to Andrew's school nurse and our friend that we were considering Glucocare, she encouraged us to be careful about possible lows. She was so impressed with its effect on Andrew. He had several episodes of lows that nothing seemed to bring up. I remember talking to her one day and she said, "I've been a pediatric E.R. nurse and not much rattles me. Today,...well, let's just say that Andrew had my full attention!" It definitely affected Andrew's insulin needs, but I hadn't considered whether it could send someone with "normal" blood sugar low.
Then someone sent me this link: http://www.childrenwithdiabetes.com/d_0c_1kc.htm This person's child uses some similar supplements. I have the name of a biochemist now, who I would love to contact. I have no doubt that supplements make a difference from my experience and the experience of others. But I also don't want to overdo it. I want answers that, realistically, no one has.
So, please, PLEASE, pray for wisdom for us! We want to take care of Kaitlyn the best way we can. So far, she seems to be doing great. Tonight, we went to Piccadilly to pick up some things for Christmas for my father-in-law. We decided to eat there. Kaitlyn ordered the kid's vegetable plate. It was the first time I looked at her face and thought I saw the coloring change. We didn't have her meter, so we waited to test until we got home. BG 130, which is okay for after eating.
For the most part, we are doing fine. We have smiles on our faces and are enjoying Christmas. But Diabetes is there. Always there. I wish you could get a day off. No, I want a cure!
I wish you all a very, Merry Christmas!
When I mentioned to Andrew's school nurse and our friend that we were considering Glucocare, she encouraged us to be careful about possible lows. She was so impressed with its effect on Andrew. He had several episodes of lows that nothing seemed to bring up. I remember talking to her one day and she said, "I've been a pediatric E.R. nurse and not much rattles me. Today,...well, let's just say that Andrew had my full attention!" It definitely affected Andrew's insulin needs, but I hadn't considered whether it could send someone with "normal" blood sugar low.
Then someone sent me this link: http://www.childrenwithdiabetes.com/d_0c_1kc.htm This person's child uses some similar supplements. I have the name of a biochemist now, who I would love to contact. I have no doubt that supplements make a difference from my experience and the experience of others. But I also don't want to overdo it. I want answers that, realistically, no one has.
So, please, PLEASE, pray for wisdom for us! We want to take care of Kaitlyn the best way we can. So far, she seems to be doing great. Tonight, we went to Piccadilly to pick up some things for Christmas for my father-in-law. We decided to eat there. Kaitlyn ordered the kid's vegetable plate. It was the first time I looked at her face and thought I saw the coloring change. We didn't have her meter, so we waited to test until we got home. BG 130, which is okay for after eating.
For the most part, we are doing fine. We have smiles on our faces and are enjoying Christmas. But Diabetes is there. Always there. I wish you could get a day off. No, I want a cure!
I wish you all a very, Merry Christmas!
Tuesday, December 20, 2011
Update on Kaitlyn
The official results from the oral glucose tolerance test (ogtt) came in today. Her 2 hour number was well over 200 at 257. That definitely shows that she is progressing toward type 1 diabetes. They need to do a retest to confirm. If the labs come back over 200 again, she will be officially diagnosed the day the labs come in. They are willing to retest her as early as next week, the week after Christmas.
The good news is that her A1c is still 5.0, where under 6.0 is considered normal. Andrew works really, really hard at his diabetes, and I've never even dreamed of a 5.0. The A1c is like a 3 month average. It says that her average blood sugar is 97. So, she may not handle sugar on an empty stomach well, but she is handling typical meals rather well.
For that reason, I scheduled her retest on Martin Luther King, Jr. Day, January 16th. It gives us a month. It gives her a little time to recover from a small toe surgery & infection last month. It lets us enjoy Christmas. It lets us get settled into a new semester at school. It gives her a little more time without a diagnosis. They admitted she probably won't need insulin at first, and all we will need to do is watch her. It extends the time she has as a newly diagnosed patient should we choose to participate in a research trial.
Speaking of research trials, she is eligible for the T1dal trial. It uses the drug, anevive, or alefacept. I'll have to blog more on that later. I only found out about it today. It is the only trial for new onset diabetes right now. So far, I'm not excited by it. Most trials only accept patients within the first 90 days of diagnosis. Once she is diagnosed, her time clock starts ticking. However, come January 16th, I fear there will be no turning back.
The good news is that her A1c is still 5.0, where under 6.0 is considered normal. Andrew works really, really hard at his diabetes, and I've never even dreamed of a 5.0. The A1c is like a 3 month average. It says that her average blood sugar is 97. So, she may not handle sugar on an empty stomach well, but she is handling typical meals rather well.
For that reason, I scheduled her retest on Martin Luther King, Jr. Day, January 16th. It gives us a month. It gives her a little time to recover from a small toe surgery & infection last month. It lets us enjoy Christmas. It lets us get settled into a new semester at school. It gives her a little more time without a diagnosis. They admitted she probably won't need insulin at first, and all we will need to do is watch her. It extends the time she has as a newly diagnosed patient should we choose to participate in a research trial.
Speaking of research trials, she is eligible for the T1dal trial. It uses the drug, anevive, or alefacept. I'll have to blog more on that later. I only found out about it today. It is the only trial for new onset diabetes right now. So far, I'm not excited by it. Most trials only accept patients within the first 90 days of diagnosis. Once she is diagnosed, her time clock starts ticking. However, come January 16th, I fear there will be no turning back.
Friday, December 16, 2011
A Diagnosis May Be Around The Corner For Kaitlyn
Kaitlyn had her oral glucose tolerance test yesterday. Her fasting number was great - 88. When they took the last blood draw at two hours, we asked for a meter reading. 222. Anything over 200 is diabetes. The number needs to first be confirmed by the lab. We will hear on Monday. Since the same meter was used for fasting & 2 hours, I don't expect it to be off enough to get us under 200. However, the test has to be done twice to actually diagnose. We can go to confirm the week after Christmas. If it is >200 again, she will be diagnosed.
It's not like we didn't know it was coming.
We didn't even get an actual diagnosis.
She's not taking insulin or checking her blood sugar.
We know God is still in control.
I still feel like I've been punched in the stomach.
Please pray!
It's not like we didn't know it was coming.
We didn't even get an actual diagnosis.
She's not taking insulin or checking her blood sugar.
We know God is still in control.
I still feel like I've been punched in the stomach.
Please pray!
Monday, November 7, 2011
SLOW Start to Teplizumab Trial
I keep watching the Teplizumab Trial through Trialnet. I'm watching because eventually we'll have to decide whether or not to enroll Kaitlyn. That is, rather, if we have the opportunity to enroll before she is diagnosed. The process is going so slowly, thanks to the FDA.
First, let me explain the trial. Teplizumab is an anti-CD3 drug that may stop the autoimmune attack and halt the disease progression. For Kaitlyn, that would be fantastic. For Andrew, it wouldn't do much. It has been tested in various trials at varying strengths and has passed safety tests. However, it has only been tested in newly diagnosed patients. Most remained on insulin, but c-peptide tests show they do make more insulin than the control group. The closer to diagnosis and younger the patient, the more dramatic the results. This is the first trial to target the at-risk group like Kaitlyn is in. If it was effective in halting her disease, she would never face type 1 diabetes!
Here is where the FDA comes in. There is a normal protocal to test adults first, then teens, and then children in a clinical trial. There is good logic in that idea, but it seems a ridiculous standard here. This study is for people at risk for a disease that normally presents in childhood. They are not allowed to give kids this drug, which has already been FDA approved to give to kids in other trials, until they find 10 adults who have antibodies, impaired glucose, but no diabetes. Then they have to agree to the trial. That is statistically very difficult! Trialnet applied to the FDA to lower the enrollment age based on the fact that this drug has safely been administered to many children. The answer: No. It is going to be a very long wait searching for ten adults still in process of getting a childhood disease who are willing to enroll in a study requiring daily infusions for two weeks.
First, let me explain the trial. Teplizumab is an anti-CD3 drug that may stop the autoimmune attack and halt the disease progression. For Kaitlyn, that would be fantastic. For Andrew, it wouldn't do much. It has been tested in various trials at varying strengths and has passed safety tests. However, it has only been tested in newly diagnosed patients. Most remained on insulin, but c-peptide tests show they do make more insulin than the control group. The closer to diagnosis and younger the patient, the more dramatic the results. This is the first trial to target the at-risk group like Kaitlyn is in. If it was effective in halting her disease, she would never face type 1 diabetes!
Here is where the FDA comes in. There is a normal protocal to test adults first, then teens, and then children in a clinical trial. There is good logic in that idea, but it seems a ridiculous standard here. This study is for people at risk for a disease that normally presents in childhood. They are not allowed to give kids this drug, which has already been FDA approved to give to kids in other trials, until they find 10 adults who have antibodies, impaired glucose, but no diabetes. Then they have to agree to the trial. That is statistically very difficult! Trialnet applied to the FDA to lower the enrollment age based on the fact that this drug has safely been administered to many children. The answer: No. It is going to be a very long wait searching for ten adults still in process of getting a childhood disease who are willing to enroll in a study requiring daily infusions for two weeks.
Sunday, November 6, 2011
Mentor For JDRF
In September, I went to training to become a mentor for JDRF, Juvenile Diabetes Research Foundation. JDRF's mission is to find a cure for type 1 diabetes and its complications through the support of research. As a mentor, though, I'm just reaching out to newly diagnosed families, offering support, and letting them know there are others who know what they are going through.
Especially in the beginning, I felt very alone in my walk with diabetes. I have great friends, but no one wants to hear about diabetes all the time, and they often don't really understand. That's why this blog was so therapeutic. You can't complain that I'm constantly talking about diabetes if you're reading a blog entitled, "Andrew's Diabetes Story"! Now, I'm having the chance to talk to other moms and help them feel less alone. Several ladies that I have called have talked for quite awhile, and I've enjoyed the conversations. It makes me sad to call though. I've called twelve already. Twelve. I'm only one mentor, so that's a small fraction of the kids. That's way too many! I am praying for a cure. In the meantime, I want something good to come from our journey. I hope being a mentor will be part of that.
Especially in the beginning, I felt very alone in my walk with diabetes. I have great friends, but no one wants to hear about diabetes all the time, and they often don't really understand. That's why this blog was so therapeutic. You can't complain that I'm constantly talking about diabetes if you're reading a blog entitled, "Andrew's Diabetes Story"! Now, I'm having the chance to talk to other moms and help them feel less alone. Several ladies that I have called have talked for quite awhile, and I've enjoyed the conversations. It makes me sad to call though. I've called twelve already. Twelve. I'm only one mentor, so that's a small fraction of the kids. That's way too many! I am praying for a cure. In the meantime, I want something good to come from our journey. I hope being a mentor will be part of that.
Thursday, October 20, 2011
Three Letters
It has been quite a day! We thought we were going to have to do a $1300 repair on a bad air conditioner or buy a new one. Because of the hour, I'll skip the story, but we were blessed today by the company announcing today that they are going to fix it for FREE!
Next, I also found out that three letters came today from Trialnet. Those three letters announced that Ryan, Will, and Ben are still negative for type 1 antibodies!!! YEAH!!!! Antibodies usually show up in the first five years of life. Ben was tested at age one, but had been gluten-free & mostly dairy-free up to that point. I dreaded the possibility that he could be positive. I'm so relieved!
Then I found out that my uncle had a heart attack this morning. He is doing well, but still please say a prayer for him. Thanks!
Next, I also found out that three letters came today from Trialnet. Those three letters announced that Ryan, Will, and Ben are still negative for type 1 antibodies!!! YEAH!!!! Antibodies usually show up in the first five years of life. Ben was tested at age one, but had been gluten-free & mostly dairy-free up to that point. I dreaded the possibility that he could be positive. I'm so relieved!
Then I found out that my uncle had a heart attack this morning. He is doing well, but still please say a prayer for him. Thanks!
Sunday, October 16, 2011
Condemnation
Andrew went back to Vanderbilt the end of September. His numbers had been fluctuating quite a bit. I wanted to make changes the week before we went, but I knew the doctor would be looking at the data from the last two weeks, so I didn't want him to over correct for changes I already made. I expected him to raise his nighttime basal, decrease the daytime basal, and perhaps adjust some carb ratios. He had been running high (or very low) at night, so I knew the A1c would be up. Sure enough, it was.
The doctor's first comment when he entered the room was, "So, how long has he been running high?" If it were that simple, I promise I would have given him more insulin. The doctor looked over the numbers himself and then decided they were too random to make any changes. He noted that for every bad number there were good numbers and that if he just raised the insulin, he would tank Andrew. We can't just ignore a rising A1c, so he started asking Andrew lots of questions. Finally, he settled on, "What was his favorite snack?" Andrew answered, "Cheesits." Okay, no, Andrew doesn't eat lots of cheesits. Ryan is a very skinny 14 year-old and asked for some a couple of weeks before the appointment, so I got them. We hadn't had any in a long time, and Andrew had enjoyed some too. The doctor decided that fat might be the problem. He said he wasn't asking us to change our diet, but to watch the fat content and use an extended bolus anytime he had a high fat snack or meal. He wanted me to call back in a week and talk to him again.
I can't explain the condemnation I felt. The A1c so feels like a parenting report card. A good A1c makes you a good parent and a bad A1c makes you a bad parent. That's not true, but it is how it feels. I was a perfectionist as a student. My mom sat me down before high school and warned me that I might make a B and that it would be okay. I didn't think so. To fail now when my child bears the consequences of my mistakes is beyond upsetting. So I obsessed with everything he ate. I found an app that would calculate all the percentages for me so that I could tell if our meals were "balanced" or "high fat". Most of our meals are just fine. But I played with the boluses and recorded every bite, activity, and event in Andrew's life so I could explain everything to the doctor if needed. I made sure every snack was "balanced" and nearly came unglued when on my way home from work I found out he ate apples for a snack. I know in most homes that's a good thing, but it my warped world, that's "unbalanced"! Did he have any protein with that?
I try to live life separating condemnation and conviction. Condemnation isn't healthy, but I'm convicted of something I'm supposed to change, I want to. When the week was up, despite all the additional angst, Andrew's average on the CGM was identical to what it had been the week before. I was more convinced than ever that the basal rates needed changing. I called and we raised the basal at night and lowered it at day. The rollercoaster lows & highs stopped & the nighttime numbers have come down. We had one night were he was really low, but he had played really hard outside with some friends. That's the part that is so hard to quantify with Andrew. His average this week is back down to what it has traditionally been or a little lower. I have been convicted that I need to analyze the data more often. It gets so easy to just react to the moment and not look for the patterns. Andrew deserves better. I've scheduled data downloads & review on the calendar, and I've taught Andrew to download the Dex. I'm supervising breakfast more closely now because Gene is having to leave earlier for work four days a week. I'm calculating percentages on some meals, but not obsessing over it.
For there is now no condemnation... at least until the next doctor visit.
The doctor's first comment when he entered the room was, "So, how long has he been running high?" If it were that simple, I promise I would have given him more insulin. The doctor looked over the numbers himself and then decided they were too random to make any changes. He noted that for every bad number there were good numbers and that if he just raised the insulin, he would tank Andrew. We can't just ignore a rising A1c, so he started asking Andrew lots of questions. Finally, he settled on, "What was his favorite snack?" Andrew answered, "Cheesits." Okay, no, Andrew doesn't eat lots of cheesits. Ryan is a very skinny 14 year-old and asked for some a couple of weeks before the appointment, so I got them. We hadn't had any in a long time, and Andrew had enjoyed some too. The doctor decided that fat might be the problem. He said he wasn't asking us to change our diet, but to watch the fat content and use an extended bolus anytime he had a high fat snack or meal. He wanted me to call back in a week and talk to him again.
I can't explain the condemnation I felt. The A1c so feels like a parenting report card. A good A1c makes you a good parent and a bad A1c makes you a bad parent. That's not true, but it is how it feels. I was a perfectionist as a student. My mom sat me down before high school and warned me that I might make a B and that it would be okay. I didn't think so. To fail now when my child bears the consequences of my mistakes is beyond upsetting. So I obsessed with everything he ate. I found an app that would calculate all the percentages for me so that I could tell if our meals were "balanced" or "high fat". Most of our meals are just fine. But I played with the boluses and recorded every bite, activity, and event in Andrew's life so I could explain everything to the doctor if needed. I made sure every snack was "balanced" and nearly came unglued when on my way home from work I found out he ate apples for a snack. I know in most homes that's a good thing, but it my warped world, that's "unbalanced"! Did he have any protein with that?
I try to live life separating condemnation and conviction. Condemnation isn't healthy, but I'm convicted of something I'm supposed to change, I want to. When the week was up, despite all the additional angst, Andrew's average on the CGM was identical to what it had been the week before. I was more convinced than ever that the basal rates needed changing. I called and we raised the basal at night and lowered it at day. The rollercoaster lows & highs stopped & the nighttime numbers have come down. We had one night were he was really low, but he had played really hard outside with some friends. That's the part that is so hard to quantify with Andrew. His average this week is back down to what it has traditionally been or a little lower. I have been convicted that I need to analyze the data more often. It gets so easy to just react to the moment and not look for the patterns. Andrew deserves better. I've scheduled data downloads & review on the calendar, and I've taught Andrew to download the Dex. I'm supervising breakfast more closely now because Gene is having to leave earlier for work four days a week. I'm calculating percentages on some meals, but not obsessing over it.
For there is now no condemnation... at least until the next doctor visit.
Thank you for supporting the Walk!
Thank you to all of you who donated toward the cure and to those who came out and walked with us! Every dollar counts toward a much needed cure! It was a perfectly beautiful day! Here is a picture of the team after the walk:
Therafit sponsored out team and paid for our shirts this year! Thank you Therafit!!!
Trialnet came for the first time and I got to get Ryan, Will, and Ben rescreened locally, which was so very nice! Autoimmunity usually develops in the first five years of life, so I'm not that worried about Ryan & Will. I'm a little nervous about Ben. I hope to get three letters all on the same day saying they are all negative! Dr. Russell from Vanderbilt came. He is so nice & was great with the kids. Here he is with Andrew:
Trialnet came for the first time and I got to get Ryan, Will, and Ben rescreened locally, which was so very nice! Autoimmunity usually develops in the first five years of life, so I'm not that worried about Ryan & Will. I'm a little nervous about Ben. I hope to get three letters all on the same day saying they are all negative! Dr. Russell from Vanderbilt came. He is so nice & was great with the kids. Here he is with Andrew:
Saturday, September 3, 2011
Walk To Cure Diabetes 2011
We are walking again this year for Juvenile Diabetes Research Foundation's (JDRF's) Walk To Cure Diabetes! I so want to see a cure for this disease and a prevention before Kaitlyn has to walk this road too. Andrew and Kaitlyn helped create this video today using Animoto:
If you can help, please donate at goo.gl/G6LWY. Thank you!
If you can help, please donate at goo.gl/G6LWY. Thank you!
Saturday, August 13, 2011
More Disney
Monday, we went to Hollywood Studios. The Rockin' Roller Coaster was the favorite ride of all the parks for the oldest kids. Ben loved the playground & Disney Junior. Gene & I loved Beauty and the Beast. While at Hollywood Studios, Andrew had a low blood sugar in the low 50s. We had been at Disney for six days and had never left the property. We had used up all the juice and most of the candy that we had brought with us. We had glucose tabs that we'd been given at the exhibit hall, but we were out of the one flavor that Andrew actually likes (sour apple from Publix). I saw a stand selling bottled sodas and felt like I could get soda into him faster than I could convince him to eat the cherry tabs. Andrew looked like he was dropping fast, so, despite the line, I asked, "Excuse me, but my son is having a low blood sugar. Could you please give us a Sprite now, and then we will stand in line to pay for it?" He did, and Gene stood in line while I tended to Andrew. When Gene joined us, he said the cast member refused to let Gene pay for it!
Tuesday, we checked out and headed to Blizzard Beach for the day. We started at the first aid station to check in the spare insulin and Dex sensors that wouldn't weather a day in the park. We didn't have to do that any other day since we could leave the extras at Aunt Estelle's or the hotel. They were very nice and it worked out great! We left in the afternoon and we were back to Aunt Estelle's in time for a late dinner. We rested and did mounds of laundry on Wednesday, but headed back for another day at Epcot on Thursday!
Epcot was probably Gene's favorite park, but it was the least favorite for most of the kids. They did like Mission: Space and Test Track. I really liked Soarin'. Andrew's blood sugar ran high all day. We were getting in line for the Nemo ride when Andrew turned to me and said, "I have to go to the bathroom, and I won't be able to wait." He rarely has this problem, and it was only because of his blood sugar. Why was it so high? I don't know. Remember Hollywood Studios ran him low. It's the nature of the beast. We stopped to talk to the cast member at the entrance. I showed her the GAC and explained the situation and asked if she would be able to reunite us with the rest of our party. She looked at the card and explained that we were already approved for an alternate entrance. We should get the rest of the party and use the handicapped entrance instead. I wouldn't have normally used the GAC on that ride, but I have to admit that it was nice!
We spent the weekend resting and visiting with family. Monday, Ben had a special day with Aunt Estelle, and the rest of us returned to Magic Kingdom. Ben still hasn't asked where we were. It was a very busy, very hot day, so we needed to use the GAC more that day than any other. It was a truly magical vacation, and I would love to go back! However, I'm pretty sure it was a once in a lifetime experience for us.
Tuesday, we checked out and headed to Blizzard Beach for the day. We started at the first aid station to check in the spare insulin and Dex sensors that wouldn't weather a day in the park. We didn't have to do that any other day since we could leave the extras at Aunt Estelle's or the hotel. They were very nice and it worked out great! We left in the afternoon and we were back to Aunt Estelle's in time for a late dinner. We rested and did mounds of laundry on Wednesday, but headed back for another day at Epcot on Thursday!
Epcot was probably Gene's favorite park, but it was the least favorite for most of the kids. They did like Mission: Space and Test Track. I really liked Soarin'. Andrew's blood sugar ran high all day. We were getting in line for the Nemo ride when Andrew turned to me and said, "I have to go to the bathroom, and I won't be able to wait." He rarely has this problem, and it was only because of his blood sugar. Why was it so high? I don't know. Remember Hollywood Studios ran him low. It's the nature of the beast. We stopped to talk to the cast member at the entrance. I showed her the GAC and explained the situation and asked if she would be able to reunite us with the rest of our party. She looked at the card and explained that we were already approved for an alternate entrance. We should get the rest of the party and use the handicapped entrance instead. I wouldn't have normally used the GAC on that ride, but I have to admit that it was nice!
We spent the weekend resting and visiting with family. Monday, Ben had a special day with Aunt Estelle, and the rest of us returned to Magic Kingdom. Ben still hasn't asked where we were. It was a very busy, very hot day, so we needed to use the GAC more that day than any other. It was a truly magical vacation, and I would love to go back! However, I'm pretty sure it was a once in a lifetime experience for us.
Sunday, July 31, 2011
Fun at Magic Kingdom
The conference officially ended with a farewell breakfast on Sunday morning. We extended our stay two more nights at the same conference discounted rate. I admit I loved being on site and able to ride the buses and enjoy the extra magic hours!
Sunday, we headed to Magic Kingdom as soon as we finished breakfast. We met my aunt & cousin too. We got on the Splash Mountain & Big Thunder Mountain first before the crowds were too long. We spent a few hours at the park and then left for a break. Ben and I headed back to the hotel for nap, but the older kids went to the Contemporary with my aunt to check out their pool since it was closer. My aunt had made reservations for the girls to go to tea, so the boys headed back to our hotel anyway to rest until the heat let up.
When we got back, the line at Space Mountain was too long. Members at CWD had recommended getting a Guest Assistance Card (GAC) for our diabetic children in the heat of summer. The heat alone does crazy things to their blood sugar & they may have to stop to deal with highs & lows & extra restroom breaks, etc. Disney agreed and had someone at the Coronado on Wednesday to help us with them. Our GAC allowed Andrew to wait in a cool place or use an alternate entrance. Roller coasters were an easy place for me to justify using the card. If he has to unplug his pump and leave it behind to ride the ride, he didn't need to spend forever standing around with no insulin. We only used it on roller coasters, but it really made a huge difference!
Saturday night, Ben made it until almost 9:00 & then started saying, "I want to go home (meaning the hotel)." Ryan had been out until midnight the night before so he decided to return to the hotel with me. The three of us and a stroller got to right in front of Cinderella's castle just in time for the Wishes Nighttime Spectacular. The lights in the park went down & there was literally no way we could make it through the crowd, so we just watched. It was an amazing light show that turned the castle different colors. Ryan is old enough to appreciate how difficult that was to do, and he was mesmerized! It's harder to have magical moments with kids as they get older, but, despite the fact that Ben was still crying to go home, that was my magical moment with Ryan. When the light show was over, we did try to get out of the park before the actual fireworks. We weren't entirely successful, so when we got into the bus poor Ben uttered, "Now we're safe." We tried to take him a store or restaurant to hide for any fireworks after that. The rest of the family enjoyed the Electrical Parade and stayed until midnight on Saturday. Sunday night, Ben made it until almost midnight, and the older kids enjoyed extra magic hours until nearly 3 am!
Sunday, we headed to Magic Kingdom as soon as we finished breakfast. We met my aunt & cousin too. We got on the Splash Mountain & Big Thunder Mountain first before the crowds were too long. We spent a few hours at the park and then left for a break. Ben and I headed back to the hotel for nap, but the older kids went to the Contemporary with my aunt to check out their pool since it was closer. My aunt had made reservations for the girls to go to tea, so the boys headed back to our hotel anyway to rest until the heat let up.
When we got back, the line at Space Mountain was too long. Members at CWD had recommended getting a Guest Assistance Card (GAC) for our diabetic children in the heat of summer. The heat alone does crazy things to their blood sugar & they may have to stop to deal with highs & lows & extra restroom breaks, etc. Disney agreed and had someone at the Coronado on Wednesday to help us with them. Our GAC allowed Andrew to wait in a cool place or use an alternate entrance. Roller coasters were an easy place for me to justify using the card. If he has to unplug his pump and leave it behind to ride the ride, he didn't need to spend forever standing around with no insulin. We only used it on roller coasters, but it really made a huge difference!
Saturday night, Ben made it until almost 9:00 & then started saying, "I want to go home (meaning the hotel)." Ryan had been out until midnight the night before so he decided to return to the hotel with me. The three of us and a stroller got to right in front of Cinderella's castle just in time for the Wishes Nighttime Spectacular. The lights in the park went down & there was literally no way we could make it through the crowd, so we just watched. It was an amazing light show that turned the castle different colors. Ryan is old enough to appreciate how difficult that was to do, and he was mesmerized! It's harder to have magical moments with kids as they get older, but, despite the fact that Ben was still crying to go home, that was my magical moment with Ryan. When the light show was over, we did try to get out of the park before the actual fireworks. We weren't entirely successful, so when we got into the bus poor Ben uttered, "Now we're safe." We tried to take him a store or restaurant to hide for any fireworks after that. The rest of the family enjoyed the Electrical Parade and stayed until midnight on Saturday. Sunday night, Ben made it until almost midnight, and the older kids enjoyed extra magic hours until nearly 3 am!
Family Day at the Coronado
Saturday was Family Day at the Coronado Resort. We slept in a bit in the morning, checked out the FFL scavenger hunt, and then had a character lunch catered at the convention center. Mickey, Minney, Goofy, Donald, Woody, Jesse, and Chip and Dale were all there! The lunch was complete with great food, good photo ops, hula hoops, a DJ and dance floor, and lots of new friends!
After lunch, I took Ben back to the room for a nap, and Gene took the kids to ride the surrey! They had a wonderful time as you can see!
We could have spent the entire day just enjoying the resort. In the evening though, we couldn't resist the chance to see the magic at Magic Kingdom!
Saturday, July 30, 2011
Can We Prevent Type 1 Diabetes w/ Teplizumab?
Dr. Jay Skyler is the chairman of Type 1 Diabetes Trialnet, an international network conducting clinical trials to prevent type 1 diabetes or interdict the type 1 diabetes disease process. Kaitlyn is involved in Trialnet. Dr. Skyler did a great job teaching in this session. It was one of the hardest for me because it reminds me not of what Andrew goes through every day, but what most likely lies ahead for Kaitlyn.
He went through the process: genetic predisposition, trigger, autoimmunity antibodies, loss of first phase insulin response only detectable by IVGTT, glucose intolerance detectable by oral glucose tolerance test (OGTT), and diabetes. Once you hit OGTT glucose intolerance or dysglycemia, you have a 75 - 80% chance of developing type 1 within the next five years. That counter started ticking for Kaitlyn in December 2008.
Last summer, when Kaitlyn's numbers came back so high (194 at 2 hours where >200 is diabetes), I did quite a bit of research on Teplizumab and Diamyd. I read medical journals & did my best to decipher what it all meant even though much of it was over my head. My conclusions, for what it's worth, was that teplizumab did have an effect in preserving c-peptide, but the idea of cytokine release scared me. Diamyd was safer, but didn't seem to have much effect. Well, in December of last year, both drugs failed their clinical trials. I wasn't that surprised about Diamyd, but Teplizumab? Others online asked, "How can a drug prove effective in phase 2 trials and fail miserably in phase 3?"
Dr. Skyler answered these questions. I've lost my notes on this section, but here is what I remember. Diamyd failed, plain and simple. Teplizumab on the other hand faced two problems. The first was a poor choice in endpoints. Every trial has to preselect how success will be measured. That trial defined success as A1Cs under 6.5 and using less than typical amounts of insulin. The average A1Cs were 7.1, which though still good fails by the endpoint. The best thing Teplizumab does is preserve c-peptide. C-peptide is a measure of how much insulin you make yourself. Studies show that c-peptide > .2 puts a patient at reduced risk for hypoglycemia as well as eye and kidney problems. So a new study with sustained c-peptide as the end point could be successful.
The second challenge of the Teplizumab trial came from the company & FDA themselves. They wanted to reduce the effects of the cytokine release - headache, nausea, and other flu-like symptoms. So they reduced the dosage (again, this is from memory, but I'm fairly certain) from 45 mg in the effective phase 2 study to ...wait for it... 3 mg. Guess what? 3 mg didn't do much.
Also interesting was Dr. Skyler's comments on the cytokine release symptoms. He didn't see them as side effects since it isn't anything permanent. It was an expected intolerance of the body to the drug and proof it was doing what it was supposed to. I talked to Dr. Skyler afterwards and told him about Kaitlyn and asked him if he had any safety concerns about teplizumab and whether or not he would allow his daughter to take it. He is convinced it is safe. They have seen it preserve c-peptide in newly diagnosed patients, and it is most effective in the subgroup of children and those closest to diagnosis. For example, it worked better on those 6 weeks from diagnosis than those 12 weeks after diagnosis. The hope is what if we could stop the autoimmune attack right now when she does nothing and her A1C is 4.8? That would be wonderful.
You might worry that Dr. Skyler would only tell me what I wanted to hear. He didn't. I shared with him last year's results to her OGTT, but how this year's were close to normal. It hurt when he looked me in the eye and said, "Yes, it can fluctuate. However, at this point, we would consider your daughter at a 80-95% risk of developing type 1 in the next five years." Ouch!
Whether or not to do teplizumab is a decision we will likely have to make. Trialnet is doing a study trying to prevent diabetes altogether using teplizumab on people like Kaitlyn. The FDA requires a phase in of ages. They have to prove safety in the 18 and up population before taking 12 and up, and then 8 and up. Dr. Skyler has already requested from the FDA to take the younger crowd. Once the FDA approves 12 and up, he says that Kaitlyn's name will automatically show up to be contacted. It is being offered at Vanderbilt.
Please pray with us that we will know what to do. I know the decision is probably coming, but I'm sure we will be blind-sided. It will require daily infusions for a two week period. It is hard to know what side effects are really out there. I'm not a fan of drugs, especially experimental ones. On the other hand, every story I've read has been positive. Some are still making c-peptide 9 years later! I would love Kaitlyn to be spared this horrible disease. She is doing well right now. She started and ended her last OGTT in range, but did hit 208 in between. Her A1C is 4.8. I think it is miraculous that she is doing as well as she is. I believe it is the restraining hand of God on her life. Please pray that it continues to be so!
He went through the process: genetic predisposition, trigger, autoimmunity antibodies, loss of first phase insulin response only detectable by IVGTT, glucose intolerance detectable by oral glucose tolerance test (OGTT), and diabetes. Once you hit OGTT glucose intolerance or dysglycemia, you have a 75 - 80% chance of developing type 1 within the next five years. That counter started ticking for Kaitlyn in December 2008.
Last summer, when Kaitlyn's numbers came back so high (194 at 2 hours where >200 is diabetes), I did quite a bit of research on Teplizumab and Diamyd. I read medical journals & did my best to decipher what it all meant even though much of it was over my head. My conclusions, for what it's worth, was that teplizumab did have an effect in preserving c-peptide, but the idea of cytokine release scared me. Diamyd was safer, but didn't seem to have much effect. Well, in December of last year, both drugs failed their clinical trials. I wasn't that surprised about Diamyd, but Teplizumab? Others online asked, "How can a drug prove effective in phase 2 trials and fail miserably in phase 3?"
Dr. Skyler answered these questions. I've lost my notes on this section, but here is what I remember. Diamyd failed, plain and simple. Teplizumab on the other hand faced two problems. The first was a poor choice in endpoints. Every trial has to preselect how success will be measured. That trial defined success as A1Cs under 6.5 and using less than typical amounts of insulin. The average A1Cs were 7.1, which though still good fails by the endpoint. The best thing Teplizumab does is preserve c-peptide. C-peptide is a measure of how much insulin you make yourself. Studies show that c-peptide > .2 puts a patient at reduced risk for hypoglycemia as well as eye and kidney problems. So a new study with sustained c-peptide as the end point could be successful.
The second challenge of the Teplizumab trial came from the company & FDA themselves. They wanted to reduce the effects of the cytokine release - headache, nausea, and other flu-like symptoms. So they reduced the dosage (again, this is from memory, but I'm fairly certain) from 45 mg in the effective phase 2 study to ...wait for it... 3 mg. Guess what? 3 mg didn't do much.
Also interesting was Dr. Skyler's comments on the cytokine release symptoms. He didn't see them as side effects since it isn't anything permanent. It was an expected intolerance of the body to the drug and proof it was doing what it was supposed to. I talked to Dr. Skyler afterwards and told him about Kaitlyn and asked him if he had any safety concerns about teplizumab and whether or not he would allow his daughter to take it. He is convinced it is safe. They have seen it preserve c-peptide in newly diagnosed patients, and it is most effective in the subgroup of children and those closest to diagnosis. For example, it worked better on those 6 weeks from diagnosis than those 12 weeks after diagnosis. The hope is what if we could stop the autoimmune attack right now when she does nothing and her A1C is 4.8? That would be wonderful.
You might worry that Dr. Skyler would only tell me what I wanted to hear. He didn't. I shared with him last year's results to her OGTT, but how this year's were close to normal. It hurt when he looked me in the eye and said, "Yes, it can fluctuate. However, at this point, we would consider your daughter at a 80-95% risk of developing type 1 in the next five years." Ouch!
Whether or not to do teplizumab is a decision we will likely have to make. Trialnet is doing a study trying to prevent diabetes altogether using teplizumab on people like Kaitlyn. The FDA requires a phase in of ages. They have to prove safety in the 18 and up population before taking 12 and up, and then 8 and up. Dr. Skyler has already requested from the FDA to take the younger crowd. Once the FDA approves 12 and up, he says that Kaitlyn's name will automatically show up to be contacted. It is being offered at Vanderbilt.
Please pray with us that we will know what to do. I know the decision is probably coming, but I'm sure we will be blind-sided. It will require daily infusions for a two week period. It is hard to know what side effects are really out there. I'm not a fan of drugs, especially experimental ones. On the other hand, every story I've read has been positive. Some are still making c-peptide 9 years later! I would love Kaitlyn to be spared this horrible disease. She is doing well right now. She started and ended her last OGTT in range, but did hit 208 in between. Her A1C is 4.8. I think it is miraculous that she is doing as well as she is. I believe it is the restraining hand of God on her life. Please pray that it continues to be so!
Friday
Friday morning started with a breakfast buffet. Then Gene and I attended "Making Sense of Sensor Data" with Gary Schneiner. I was so excited to meet this author of Think Like A Pancreas! After a break, we attended "Can We Prevent Type 1 Diabetes" with Jay Skyler. That one will need its own post. Then we had lunch and one last trip to the Exhibit Hall. Then Gene and I attended "Advanced Pumping Strategies That Work" with John Walsh, author of Pumping Insulin. It was amazing! It included lots of tips like a 1% rise in TDD (total daily dose) will drop the average (which correlates to A1C) 4 points. Your TDD is too high if you have 2 low to high swings in a day. His book is also full of great formulas like this. Whenever I need to just start over for Andrew, I pull out his book. An example of this will be in a few weeks. Andrew starts baseball practices Monday. Then he goes back to school in a couple weeks. He will run high the first week because of the excitement and nerves of something new. Then, he will settle into the routine of higher activity. At least I think so - there isn't much recess in 5th grade. This will require more than small tweaking. I'll sit down with the formulas and his schedule (P.E. is after lunch this year) and essentially start over. My job will be easier because of the teaching of our great nurse at Vanderbilt and John Walsh. After this session was a break and then the Closing Keynote by Jay Hewitt. He is an Ironman Triathlete who began training for the Ironman after he was diagnosed with type 1 diabetes. He was a very inspiring man and speaker!
Ryan and the other teens spent the day at Hollywood Studios. They were well supervised and had a great time. They were back by the time we got out of the keynote, so we all went to the pool for a little while. The teens had a dinner dance from 8 until midnight, and the tweens had a tween social from 8 until 11. Andrew ate the ice cream and left. Kaitlyn and Ryan had fun and stayed until the bitter end! Again, I didn't have that much to do, but I was tired waiting up for my teen and pre-teen. There are definitely scary days ahead!
Ryan and the other teens spent the day at Hollywood Studios. They were well supervised and had a great time. They were back by the time we got out of the keynote, so we all went to the pool for a little while. The teens had a dinner dance from 8 until midnight, and the tweens had a tween social from 8 until 11. Andrew ate the ice cream and left. Kaitlyn and Ryan had fun and stayed until the bitter end! Again, I didn't have that much to do, but I was tired waiting up for my teen and pre-teen. There are definitely scary days ahead!
Epcot Thursday Night
After Test Track, we headed to the countries. Then Andrew's pump alarm went off. Out of insulin. Yes, there had been a warning. I think it was at breakfast. We had plenty left at the time. We just forgot to put more in before heading to Epcot. For dessert. His blood sugar was around 150. It was already evening and they closed at 9:00. I offered to take just Andrew back to the hotel, but Gene wanted everyone to stay together & all stay or all leave. I chose to stay. Even though the pump said it was empty, there is still some insulin in the bottom of the cartridge. I gave Andrew the option of taking a shot or saving his dessert until he got back to the room. He chose waiting until the dessert was staring him in the face. Then he wanted the shot.
Ben loved the movie in France. I thought he might be bored, so I started quietly pointing things out to him in the opening scenes. He was so fascinated! I loved watching him watch the movie! Then we headed over to the American movie, which was to get out right at 8:45 in time for the IllumiNations show. When we got out, though, it was POURING down rain. Not raining. Pouring! Ben was tired. Andrew's blood sugar was high. Ben didn't like fireworks, so we just ran for the exit. From the back of the park. With one umbrella, five kids, and a stroller. Worried about whether Andrew should be exercising at all. Was he making ketones? The ending was rough, but we had enjoyed most of Epcot up to that point. Once we got back to the room, all was well. Andrew's blood sugar came down fine as soon as he got a new site and insulin. And, no. No ketones this time.
The Artificial Pancreas
diaTribe talked quite a bit about the Artificial Pancreas on Wednesday and so did Stu Weinzimer & Ed Damiano from JDRF on Thursday. I skipped Wednesday's session because of arriving late & missed the Thursday session because of Will's eye, but Gene attended both. This post comes from my understanding, Gene's handouts, and the FDA's website.
An artificial pancreas pairs the continuous glucose monitor & insulin pump like the ones that Andrew already wears with a control algorithm that makes changes to his insulin delivery as the data comes in. We already have experimental versions of this. Many trials ask the patient to control their diabetes with set portion sizes and activity one day and then allows the computer to control insulin delivery with the same food & activity the next. The computer algorithm consistently outperforms people. However, the trials are still highly supervised in a hospital setting. They may be moving to a clinical setting, and we will know we are making progress when they get approved for home trial.
There is some danger in giving technology control over insulin delivery when too much insulin or too little insulin can be so dangerous so quickly. The FDA in June 2011 issued a statement of support of developing an artificial pancreas and provided guidelines to companies seeking to develop one. There will be several types of artificial pancreas device systems. The first is a reactive low glucose suspend system. When the cgm detects very low blood sugars and no response from the user, it suspends insulin delivery. It's primary function is to save lives of people who are really low and asleep or passed out and unable to respond to the low. Since we have a system in place to wake me when Andrew is low, I don't expect this first stage to help Andrew's glucose control at all. It will be an important first step in beginning to trust the cgm technology and will mean the next few steps are on the way. A predictive low glucose suspend system will antipate lows and temporarily suspend insulin to prevent lows. Since low blood sugars often rebound to highs, preventing lows would improve patient control and take away some of the fear of embarassing low blood sugars.
I'm even more excited about the treat-to-range or treat-to-target systems. The treat-to-range system system not only prevents lows but prevents high blood sugars as well. You specify the blood sugar range you wish to stay between and the pump dispenses more or less insulin as you approach the high or low end of your range. According to the FDA descriptions, these pumps would still require the patient to check blood sugars & bolus for meals. This sounds to me like what we once told would be a "minimizer" pump, but I don't really hear that terminology much anymore. The treat-to-target systems would be fully automated, requiring no boluses or carb counting. You would calibrate the CGM twice a day with a finger prick & then go about your day staying in target. Is this possible? Yes! Currently, trials are achieving 70%+ time in target with often 90%+ overnight control. The data I saw (See the Future of the Cure Post) showed the patient going slightly over 200 after eating & not bolusing and hitting 68 after exercising and only eating salad for lunch. That was still better than what he did on his own under the same conditions.
The FDA already envisions three types of treat-to-target systems. The first is insulin only, which just adjusts insulin amounts to achieve the results. This is working now in trials & would work even better with faster acting insulin. However, our bodies use a combination of insulin and glucagon to control our glucose levels, so scientists are beginning to conceive of bi-hormonal pumps that give insulin to treat high glucose levels and faster-acting glucagon or similar hormone to raise low glucose. It will take longer to approve through the FDA since there is no currently approved glucagon pump. The last treat-to-target system is a hybrid system that while still fully automated, allows patients to supplement insulin pre-meal to prevent post-meal spikes. I like this idea. Currently, cgms measure interstitial fluid which lags behind blood glucose by about 10 minutes. Then boluses of insulin take about 15 minutes to absorb and start working. So, in an automated system, the insulin would begin working about 25 minutes after ingesting the carbs. Pre-bolusing is important now, so I like the idea of keeping the capability.
Rumor has it that Dexcom has a new CGM that is smaller & more accurate that is pending FDA approval. Insulin pumps have already been approved, so that isn't an obstacle. I don't see anything new coming out until we see the new, more accurate sensors approved. I expect to see low glucose suspend systems next, etc.
Is the artificial pancreas a cure? NO!!! Andrew already wears a pump and a cgm, and I have seen both fail. Being connected to life support is not a cure. I have even seen angry posts from patients toward JDRF for investing so much into the artificial pancreas. I don't agree with them either. I want a cure! In the meantime, however, God has allowed Andrew to have type 1 diabetes. We have to do the best we can to manage it. Andrew already wears the pump and the cgm. Would I like them to talk to each other and prevent those high and low blood sugars that take their toll on his little body? YES! Insulin isn't a cure, but a treatment, but I'm so glad to have it and to see Andrew alive and healthy. The artificial pancreas won't be a cure, but I'd be so glad to have it and to see Andrew alive, healthy, in range, not afraid of lows, and at less risk for the complications of diabetes that come from high blood sugar! So, in my opinion, bring on the artificial pancreas!
An artificial pancreas pairs the continuous glucose monitor & insulin pump like the ones that Andrew already wears with a control algorithm that makes changes to his insulin delivery as the data comes in. We already have experimental versions of this. Many trials ask the patient to control their diabetes with set portion sizes and activity one day and then allows the computer to control insulin delivery with the same food & activity the next. The computer algorithm consistently outperforms people. However, the trials are still highly supervised in a hospital setting. They may be moving to a clinical setting, and we will know we are making progress when they get approved for home trial.
There is some danger in giving technology control over insulin delivery when too much insulin or too little insulin can be so dangerous so quickly. The FDA in June 2011 issued a statement of support of developing an artificial pancreas and provided guidelines to companies seeking to develop one. There will be several types of artificial pancreas device systems. The first is a reactive low glucose suspend system. When the cgm detects very low blood sugars and no response from the user, it suspends insulin delivery. It's primary function is to save lives of people who are really low and asleep or passed out and unable to respond to the low. Since we have a system in place to wake me when Andrew is low, I don't expect this first stage to help Andrew's glucose control at all. It will be an important first step in beginning to trust the cgm technology and will mean the next few steps are on the way. A predictive low glucose suspend system will antipate lows and temporarily suspend insulin to prevent lows. Since low blood sugars often rebound to highs, preventing lows would improve patient control and take away some of the fear of embarassing low blood sugars.
I'm even more excited about the treat-to-range or treat-to-target systems. The treat-to-range system system not only prevents lows but prevents high blood sugars as well. You specify the blood sugar range you wish to stay between and the pump dispenses more or less insulin as you approach the high or low end of your range. According to the FDA descriptions, these pumps would still require the patient to check blood sugars & bolus for meals. This sounds to me like what we once told would be a "minimizer" pump, but I don't really hear that terminology much anymore. The treat-to-target systems would be fully automated, requiring no boluses or carb counting. You would calibrate the CGM twice a day with a finger prick & then go about your day staying in target. Is this possible? Yes! Currently, trials are achieving 70%+ time in target with often 90%+ overnight control. The data I saw (See the Future of the Cure Post) showed the patient going slightly over 200 after eating & not bolusing and hitting 68 after exercising and only eating salad for lunch. That was still better than what he did on his own under the same conditions.
The FDA already envisions three types of treat-to-target systems. The first is insulin only, which just adjusts insulin amounts to achieve the results. This is working now in trials & would work even better with faster acting insulin. However, our bodies use a combination of insulin and glucagon to control our glucose levels, so scientists are beginning to conceive of bi-hormonal pumps that give insulin to treat high glucose levels and faster-acting glucagon or similar hormone to raise low glucose. It will take longer to approve through the FDA since there is no currently approved glucagon pump. The last treat-to-target system is a hybrid system that while still fully automated, allows patients to supplement insulin pre-meal to prevent post-meal spikes. I like this idea. Currently, cgms measure interstitial fluid which lags behind blood glucose by about 10 minutes. Then boluses of insulin take about 15 minutes to absorb and start working. So, in an automated system, the insulin would begin working about 25 minutes after ingesting the carbs. Pre-bolusing is important now, so I like the idea of keeping the capability.
Rumor has it that Dexcom has a new CGM that is smaller & more accurate that is pending FDA approval. Insulin pumps have already been approved, so that isn't an obstacle. I don't see anything new coming out until we see the new, more accurate sensors approved. I expect to see low glucose suspend systems next, etc.
Is the artificial pancreas a cure? NO!!! Andrew already wears a pump and a cgm, and I have seen both fail. Being connected to life support is not a cure. I have even seen angry posts from patients toward JDRF for investing so much into the artificial pancreas. I don't agree with them either. I want a cure! In the meantime, however, God has allowed Andrew to have type 1 diabetes. We have to do the best we can to manage it. Andrew already wears the pump and the cgm. Would I like them to talk to each other and prevent those high and low blood sugars that take their toll on his little body? YES! Insulin isn't a cure, but a treatment, but I'm so glad to have it and to see Andrew alive and healthy. The artificial pancreas won't be a cure, but I'd be so glad to have it and to see Andrew alive, healthy, in range, not afraid of lows, and at less risk for the complications of diabetes that come from high blood sugar! So, in my opinion, bring on the artificial pancreas!
Friday, July 29, 2011
What We Learned From the Stem Cell Session
Disclaimer: I took notes & have studied, so I believe all of these facts to be accurate. However, I am a mom not a doctor or scientist!
Islet cell translants have been very successful. Over 1000 transplants have been done and >90% are insulin free after one year. Sounds great, right? The problem is we have no way to get enough islets to help everyone. The natural leap is to look to stem cells to become islet cells.
There are several types of stem cells. Mesenchymal stem cells (MSC) can develop into tissue and can be found in bone marrow & dental pulp. Hematopoietic stem cells (HSC) can develop into all the blood cell types and are found in cord blood and also in bone marrow. There are also liver stem cells which are similar to pancreatic cells. In mice, human c-peptide has been detected from transplanted liver cells. Embryonic Stem Cells (ES) are very powerful, but the moral issues there are huge and it simply isn't necessary to use them at all. Scientists have found that they can reprogram skin cells by releasing genes and essentially taking them back in time. This creates cells similar to embryonic stem cells, but you can get these cells from the patient!
To do this, we have to consider genes. Our DNA has thousands of genes. When proteins are needed, genes are transcribed into RNA, and the proteins are built based on the code in the RNA. In the past, genes have been shuttled with viruses. However, if you split a cancer preventing gene, you will get cancer. You really don't want to use viruses! So, they tried to use the proteins themselves, but they can't get inside the cells. They program a key (amino acid) that can get into a cell and, once inside, turn the cell into whatever they need it to be. Scientists use this protein technology to create stem cells, educate stem cells, and then reprogram adult cells into islets.
This research still isn't in patients yet. It isn't safe yet. You want to teach cells to replicate & create lots of islet cells, but if you have out of control growth, it becomes cancer. They are working on a shut off switch too. Only weeks ago, a group found a way to send Messenger RNA to tell cells to shut down.
They have also learned that islet cells make up 2% of the pancreas (98% makes digestive juices), and yet islet cells get 1/4 of the oxygen supply of the entire pancreas! In isolating islet cells, they found that islets die without high levels of oxygen. This seems really interesting to me, and seems worth pondering.
I was probably speculating what causes reduced oxygen in the pancreas, when I missed the full quote, but he mentioned something about still having a 20% incidence of benigh tumors. I think he was talking about in the mice trials. So, would I trust stem cell research done in other countries? No! There is still too much to learn, but they are learning quickly. Perhaps the day will come though, that doctors can take Andrew's skin cells, reprogram them in a lab to become islet cells, allow them to replicate, insert the killer RNA to shut down anything other than healthy islet cells, and safely transplant those cells without need for rejection medication. Those cells could provide enough insulin for him to be insulin free for at least up to a year. Even without fixing the autoimmune attack, if healthy insulin secretion could be attained in a once a year, safe, out-patient procedure, that would be pretty close to a cure. Better yet, would be shutting off the autoimmune attack and having a once-for-all procedure to restore insulin production and cure diabetes.
Islet cell translants have been very successful. Over 1000 transplants have been done and >90% are insulin free after one year. Sounds great, right? The problem is we have no way to get enough islets to help everyone. The natural leap is to look to stem cells to become islet cells.
There are several types of stem cells. Mesenchymal stem cells (MSC) can develop into tissue and can be found in bone marrow & dental pulp. Hematopoietic stem cells (HSC) can develop into all the blood cell types and are found in cord blood and also in bone marrow. There are also liver stem cells which are similar to pancreatic cells. In mice, human c-peptide has been detected from transplanted liver cells. Embryonic Stem Cells (ES) are very powerful, but the moral issues there are huge and it simply isn't necessary to use them at all. Scientists have found that they can reprogram skin cells by releasing genes and essentially taking them back in time. This creates cells similar to embryonic stem cells, but you can get these cells from the patient!
To do this, we have to consider genes. Our DNA has thousands of genes. When proteins are needed, genes are transcribed into RNA, and the proteins are built based on the code in the RNA. In the past, genes have been shuttled with viruses. However, if you split a cancer preventing gene, you will get cancer. You really don't want to use viruses! So, they tried to use the proteins themselves, but they can't get inside the cells. They program a key (amino acid) that can get into a cell and, once inside, turn the cell into whatever they need it to be. Scientists use this protein technology to create stem cells, educate stem cells, and then reprogram adult cells into islets.
This research still isn't in patients yet. It isn't safe yet. You want to teach cells to replicate & create lots of islet cells, but if you have out of control growth, it becomes cancer. They are working on a shut off switch too. Only weeks ago, a group found a way to send Messenger RNA to tell cells to shut down.
They have also learned that islet cells make up 2% of the pancreas (98% makes digestive juices), and yet islet cells get 1/4 of the oxygen supply of the entire pancreas! In isolating islet cells, they found that islets die without high levels of oxygen. This seems really interesting to me, and seems worth pondering.
I was probably speculating what causes reduced oxygen in the pancreas, when I missed the full quote, but he mentioned something about still having a 20% incidence of benigh tumors. I think he was talking about in the mice trials. So, would I trust stem cell research done in other countries? No! There is still too much to learn, but they are learning quickly. Perhaps the day will come though, that doctors can take Andrew's skin cells, reprogram them in a lab to become islet cells, allow them to replicate, insert the killer RNA to shut down anything other than healthy islet cells, and safely transplant those cells without need for rejection medication. Those cells could provide enough insulin for him to be insulin free for at least up to a year. Even without fixing the autoimmune attack, if healthy insulin secretion could be attained in a once a year, safe, out-patient procedure, that would be pretty close to a cure. Better yet, would be shutting off the autoimmune attack and having a once-for-all procedure to restore insulin production and cure diabetes.
Thursday's Schedule
8:00 Breakfast - We started Thursday morning with a wonderful breakfast. There were buffet lines in the hall & then large rooms with tables for 10 so that you could visit with other families as you ate. Of course, we take up 7 of the 10 chairs, so we always met couples with only one child. I enjoyed each and every conversation.
9:00 Opening Keynote Richard Rubin & Oliver Double on "The Importance of Humor". Oliver Double's song "Think Like A Pancreas" was hilarious & one of Andrew's favorite parts of the entire conference. I wish I could find it on youtube!
10:00 Break; Ben and Ryan had reported to classes at 9:00, but Kaitlyn, Andrew, and Will found their classes after the break. Kaitlyn & Andrew were Tweens & Will was an elementary student.
10:45 DRI Research Update 1: Stem Cells: New Sources, More Options
We could choose from lots of sessions. This is the one Gene and I both chose. I'll write about what I learned in this session in its own post.
During this session, Will was running with his nametag on, when it swung up and hit him in the ... EYE! It was really hurting, but I was hoping it would go away over lunch...
12:00 Lunch Buffet
After lunch, Will wasn't feeling any better. There was an eye doctor doing retinal screenings for the type 1's, so I took Will there. They checked Will's eye & said they didn't think he had scratched the retina, but that with it still bothering him, he should go rest in the dark.
1:30 Will & I go to the hotel room; Gene attends "The Artificial Pancreas Project."
2:45 Snack Break - Ben loved the Mickey Bars!
3:30 DRI Research Update 2: Tissue Engineering & Immunology: New Ways To Protect Islets. Will felt well enough to return to his class. Yeah!
6:30 Family & Friends Banquet with Crystal Bowersox - we didn't go! Tickets were $25 each for seven of us. We were already getting Disney tickets, so it was easier to add an extra ticket for everyone. So we headed to EPCOT!
9:00 Opening Keynote Richard Rubin & Oliver Double on "The Importance of Humor". Oliver Double's song "Think Like A Pancreas" was hilarious & one of Andrew's favorite parts of the entire conference. I wish I could find it on youtube!
10:00 Break; Ben and Ryan had reported to classes at 9:00, but Kaitlyn, Andrew, and Will found their classes after the break. Kaitlyn & Andrew were Tweens & Will was an elementary student.
10:45 DRI Research Update 1: Stem Cells: New Sources, More Options
We could choose from lots of sessions. This is the one Gene and I both chose. I'll write about what I learned in this session in its own post.
During this session, Will was running with his nametag on, when it swung up and hit him in the ... EYE! It was really hurting, but I was hoping it would go away over lunch...
12:00 Lunch Buffet
After lunch, Will wasn't feeling any better. There was an eye doctor doing retinal screenings for the type 1's, so I took Will there. They checked Will's eye & said they didn't think he had scratched the retina, but that with it still bothering him, he should go rest in the dark.
1:30 Will & I go to the hotel room; Gene attends "The Artificial Pancreas Project."
3:30 DRI Research Update 2: Tissue Engineering & Immunology: New Ways To Protect Islets. Will felt well enough to return to his class. Yeah!
6:30 Family & Friends Banquet with Crystal Bowersox - we didn't go! Tickets were $25 each for seven of us. We were already getting Disney tickets, so it was easier to add an extra ticket for everyone. So we headed to EPCOT!
Thursday, July 28, 2011
Wedneday at FFL (Friends For Life Conference)
Wednesday, we got up & packed the van again to drive back to the Coronado Resort & Convention Center at Disney. We got there around noon. The resort was beautiful!
Thursday and Friday were the main teaching days of the conference, but you could register for sessions on Wednesday as well. Gene and I had both signed up for a 1:00 session, so we had hoped to get there earlier, but it was hard to get going after such a long day the day before. Gene decided to go to the session (Diatribe- Targeting a Cure for Type 1 Diabetes: How Long Will We Have To Wait?) while I registered at the conference, got the GAC (again more later), met with Medtronic about evaluating their pump (Andrew still prefers Animas), and then unpacked in our room. At 3:00, we went to the first timers reception. We not only learned about the conference, but they split us up by region. We met another family from Alabama and then the former NFL football player Kendall Simmons joined us! He was so friendly and down to earth, and a great example to the kids!
That evening was the grand opening of the Exhibit Hall. You could visit every pump company out there. I also remember FRIO, Spi-belt, Trialnet, & Dex-4. I even saw one I hadn't considered before. The kids got books on diabetes, coloring books, t-shirts, toys, meters, etc. My favorite was the Nova MAX Plus ketone meter. It checks glucose or ketones & doesn't require any coding to go between them. I like it much better than the Precision Xtra. Blood ketones are so much more accurate than urine ketones, but the strips cost so much ($5 each, not covered by our insurance) that we only use them when Andrew is sick. Free strips are like gold! They had lots of games & goodies for the kids, so they all had a great time. The sugar-free sno-cones were Andrew's favorite. It was the best selection of flavors that he could have that he had ever seen!
Ryan, 13, had a teen ice breaker from 9 - 10 pm. The teens were going to Hollywood Studios on Friday and had to stay with a partner, so they needed to get started making friends! Ryan had a great time. I think it was my first experience staying awake waiting for my teenager to come home.
Thursday and Friday were the main teaching days of the conference, but you could register for sessions on Wednesday as well. Gene and I had both signed up for a 1:00 session, so we had hoped to get there earlier, but it was hard to get going after such a long day the day before. Gene decided to go to the session (Diatribe- Targeting a Cure for Type 1 Diabetes: How Long Will We Have To Wait?) while I registered at the conference, got the GAC (again more later), met with Medtronic about evaluating their pump (Andrew still prefers Animas), and then unpacked in our room. At 3:00, we went to the first timers reception. We not only learned about the conference, but they split us up by region. We met another family from Alabama and then the former NFL football player Kendall Simmons joined us! He was so friendly and down to earth, and a great example to the kids!
That evening was the grand opening of the Exhibit Hall. You could visit every pump company out there. I also remember FRIO, Spi-belt, Trialnet, & Dex-4. I even saw one I hadn't considered before. The kids got books on diabetes, coloring books, t-shirts, toys, meters, etc. My favorite was the Nova MAX Plus ketone meter. It checks glucose or ketones & doesn't require any coding to go between them. I like it much better than the Precision Xtra. Blood ketones are so much more accurate than urine ketones, but the strips cost so much ($5 each, not covered by our insurance) that we only use them when Andrew is sick. Free strips are like gold! They had lots of games & goodies for the kids, so they all had a great time. The sugar-free sno-cones were Andrew's favorite. It was the best selection of flavors that he could have that he had ever seen!
Ryan, 13, had a teen ice breaker from 9 - 10 pm. The teens were going to Hollywood Studios on Friday and had to stay with a partner, so they needed to get started making friends! Ryan had a great time. I think it was my first experience staying awake waiting for my teenager to come home.
Pre-Conference
We headed out on Sunday, July 3rd, and the kids travelled really well. We warned Ben that we drive from before the sun came up until after the sun went down. That worked out pretty well. He has driven me crazy asking about how much longer to get to the ball field before, but he didn't ask on the way to Florida. We occasionally commented about the sun still being up. We stopped for lunch, gas, dinner, and gas. We left around 6:30 a.m. Central time & arrived at my aunt's home in Vero Beach at 9:30 p.m. Eastern time. It was a long day, but well worth it!
July 4th, we headed to the beach, and all got horribly burnt. Yes, I put sunscreen on the kids. No, it wasn't enough. Ben didn't care much for the beach. He was quickly afraid of the waves & begged me to take him out. On the way, a wave surprised me and toppled me over. I knew I couldn't let him go under without him being traumatized, so I landed full-force on my knees to steady myself and hold his head above the water. I managed to scrape my knee enough for it to bleed pretty freely, so he was still traumatized. Aunt Estelle has convinced him that they "fixed the hole at the beach" and it is safe now.
Tuesday, our family, my aunt, and her granddaughter (I'll call her K) drove two hours up to Orlando for a day at Animal Kingdom. I had never been. We had such a great time!!! K led us straight to the back of the park and we went on the Kilimanjaro Safari first. The animals were all out & the sight was spectacular! Then we headed over to Expedition Everest, which had only a 15 minute wait! Gene had taken the tickets to get fastpasses, so Andrew didn't disconnect his pump until we were ready to ride the roller coaster. Pumps aren't supposed to go on roller coasters because of magnetic forces. I had heard/read that Andrew could give the $7000 pump to one of the cast members & pick it up after the ride. They said NO! I was so upset! I could have just held the pump & missed the ride, but it was the first real roller coaster for my kids & I hated to miss it. Finally, another cast member agreed to leave it at the exit, even though "they couldn't be responsible for it." That was good enough for me, and we were off! We grabbed the pump at the end, gave it to Gene & rode it again with still very little wait. We never asked anyone to hold the pump again. Gene isn't fond of roller coasters & someone had to stay with Ben anyway. Usually, Andrew gave the pump to Gene before getting in line. I'll explain the GAC later, but for those who already know about it, we did not have one this day. We enjoyed our day at Animal Kingdom. I think because it was first, and because we were all relatively rested, it was one of the most magical days for me! It was also the day that Ben met Mickey Mouse for the very first time!
July 4th, we headed to the beach, and all got horribly burnt. Yes, I put sunscreen on the kids. No, it wasn't enough. Ben didn't care much for the beach. He was quickly afraid of the waves & begged me to take him out. On the way, a wave surprised me and toppled me over. I knew I couldn't let him go under without him being traumatized, so I landed full-force on my knees to steady myself and hold his head above the water. I managed to scrape my knee enough for it to bleed pretty freely, so he was still traumatized. Aunt Estelle has convinced him that they "fixed the hole at the beach" and it is safe now.
Tuesday, our family, my aunt, and her granddaughter (I'll call her K) drove two hours up to Orlando for a day at Animal Kingdom. I had never been. We had such a great time!!! K led us straight to the back of the park and we went on the Kilimanjaro Safari first. The animals were all out & the sight was spectacular! Then we headed over to Expedition Everest, which had only a 15 minute wait! Gene had taken the tickets to get fastpasses, so Andrew didn't disconnect his pump until we were ready to ride the roller coaster. Pumps aren't supposed to go on roller coasters because of magnetic forces. I had heard/read that Andrew could give the $7000 pump to one of the cast members & pick it up after the ride. They said NO! I was so upset! I could have just held the pump & missed the ride, but it was the first real roller coaster for my kids & I hated to miss it. Finally, another cast member agreed to leave it at the exit, even though "they couldn't be responsible for it." That was good enough for me, and we were off! We grabbed the pump at the end, gave it to Gene & rode it again with still very little wait. We never asked anyone to hold the pump again. Gene isn't fond of roller coasters & someone had to stay with Ben anyway. Usually, Andrew gave the pump to Gene before getting in line. I'll explain the GAC later, but for those who already know about it, we did not have one this day. We enjoyed our day at Animal Kingdom. I think because it was first, and because we were all relatively rested, it was one of the most magical days for me! It was also the day that Ben met Mickey Mouse for the very first time!
Monday, July 25, 2011
Ben & the conference?
My aunt lives a couple hours from Orlando. She argued that she should keep Ben during the conference since he is too young (he was three in May) to get much out of it. He could stay on a routine, take naps, etc. We were going to sneak in a little Disney "big kid style" before bringing Ben back to see Magic Kingdom and Animal Kingdom. We told Ben that he would stay with her while we went to diabetes meetings, but then we would come back & take him to see Mickey Mouse. However, my aunt started having horrible migraines in May and realized that she might not be able to care for Ben. We signed up Ben for childcare on the last possible day. CWD was so wonderful about adding Ben. My aunt is doing better, but Ben was ready to come now! We ended up sticking with the plan to see some of Disney after the conference, return to my aunt's home to rest, and then travel back for a couple more days at Disney World.
Sunday, July 24, 2011
Looking for a new family camp
I've wanted to write this blog since we missed a week of school due to snow in January! I had promised the kids that we would go back to family camp that was supposed to be right after school got out. In January, we had a wonderful snow. I enjoyed it, but, since I work in a different system, every snow day pushed my school year further and further into family camp. I got out of school in time for the last day of family camp. I searched the internet for family diabetes camps and realized that we have something very special and family camps are rare. I did, however, find a conference we could all attend ... in Disney World! It was the Friends For Life International Children With Diabetes Conference on July 5-10, 2011. I'll take a few posts to tell the story, but we had a wonderful time!
Friday, July 1, 2011
Dr. Faustman Interview
Dr. Faustman believes that if in the presence of TNF (tumor necrosis factor), the bad T cells that attack the pancreas will die. She is attempting to raise TNF with a safe BCG vaccine used for tuberculosis. Her sample size was incredibly small and her patients didn't require less insulin or go into remission. Still, I think her study may change the course of diabetes research. She is one of the few researchers to attempt to work with patients who have had diabetes for a long period of time. She showed two significant things with her patients. First, the "bad" t-cells died, and, more importantly, the c-peptide levels went up. When insulin is created, it has a part that is broken off called c-peptide. Measuring c-peptide then becomes the gold standard for how much insulin the body creates. Most people have given up on the idea of patients who have had type 1 for more than a year ever producing more insulin than they currently make.
I'm still cautiously hopeful. Most of the therapies I looked at last summer when Kaitlyn's test came back so poorly have failed. Lots of drugs seem to improve c-peptide for awhile, but then they all trail off. Even those that help c-peptide might not improve A1c or reduce insulin use. I think this is still just a small piece of the puzzle. It is a far cry from a cure. However, I'm thankful for every little piece.
I'm still cautiously hopeful. Most of the therapies I looked at last summer when Kaitlyn's test came back so poorly have failed. Lots of drugs seem to improve c-peptide for awhile, but then they all trail off. Even those that help c-peptide might not improve A1c or reduce insulin use. I think this is still just a small piece of the puzzle. It is a far cry from a cure. However, I'm thankful for every little piece.
Wednesday, June 29, 2011
Another Exciting Weekend of Baseball
I was nervous packing for the all-star tournament last weekend after the diabetes disaster the previous weekend. We made it through with no ketones!!! Yeah!
Andrew's team played two games Saturday morning & then was finished for the day. Will's team had a morning game and two afternoon games. We were set for one very long, hot day at the ballfield. Friday night, the father of one of Andrew's friend asked if Andrew could come back to the hotel & swim & hang out with his son & the other teammates instead of watching Will's games. It definitely would be more fun than baking in the sun for an additional four hours.
I knew I should say yes. The advice is, "If you would have said yes before diabetes, say yes now & find a way to take care of diabetes at the same time." However, the idea sent me into panic mode. I didn't commit, but I reminded him of Andrew's diabetes & and said he would at least need his sister to accompany him if he was going to go swimming. When I talked to Gene on the phone, he wasn't excited about him going swimming without me either. It is very difficult to notice when you are weak and sweaty when you are in the pool. Andrew is usually 50 before he knows that he is low if he is in the pool. And he drops FAST! At 9:15 Friday night, Andrew's BG was 323, & he took a correction. We went downstairs, disconnected the pump, and swam for about 30 minutes. He got ready for bed, checked his blood sugar at 10:19 & was 62. So I'm nervous about letting him swim without me watching...
Saturday, after 3 hours at the ballfield, Kaitlyn and Andrew really want to go with their friend back to the hotel. I explained to the dad my concerns about Andrew, and we agreed on this plan. They would go eat first, & the kids would use the Restaurants app on the iPod to count carbs & bolus. Andrew would check his blood sugar every 30 minutes to an hour while at the pool and, if he was anywhere close to 100, he would eat a snack. I gave him money to stock up on snacks and make sure there was plenty to eat. I made sure the dad had my number, and let them go. I was scared, but I did it.
I said goodbye in the parking lot and then hurried to Will's field, just in time to see him get nailed in the forehead with a ball that bounced up on the lip between the sod & dirt. I watched as the coaches checked on him & Will decided to stay in the game. When he came off of the field though, he began to cry again as soon as he saw me. I settled him down. Soon, the coaches called me back over. Will was dizzy and nauseous. Not good signs after a head injury. It was also very hot outside, and we had been at the ballfield since 8 a.m. When the game was over, the team had a short break before the next game. The rest of the team stayed & watched the other teams play. Will and I left the park to get Will cooled down & hydrated so that I could see if it was heat or injury bothering him. It was heat. My Will returned to normal and was able to play in the last game of the day!
I was exhausted by the time our 8 1/2 hours at the ballfield came to an end. I eagerly returned to the hotel to check on Andrew. I was still in the hallway when Kaitlyn called to say that Andrew's site had come out. No problem. We had it back in very quickly. I asked Kaitlyn if Andrew had gone low. She replied, "Yes, a lot. He spent most of his time sitting out of the pool." So I asked Andrew later how low he had gone. "The meter said Low, under 20!" I checked the meter, and sure enough that's true. Under 20. Under 20. The grace of God is the only reason he didn't have a seizure or pass out right there. In a pool. Pools aren't the best place to have seizures or pass out. No, the idea just sends chills down my spine. He's fine though. He treated himself. When Kaitlyn asked if he was okay, he just said yes, so she didn't know how low he was until he told me. That's not safe. He checked his BG for the first time at the pool at 2:43 & was 39. He treated, but felt worse. Recheck at 2:57 was LOW.
Being that low for that long depletes the body's ability to prevent and recognize lows. Sunday afternoon, he came to me & showed me Dex said that he was going low. He looked low & I wanted to be aggressive because of Saturday's low, so I dropped glucose tabs in his mouth before testing his BG. LOW, under 20 again at 3:55 pm! I gave him juice too. Will was finished, so we headed to McDonald's. Recheck at 4:17 after 31g of fast-acting carbs - LOW, under 20. Seriously? Under 20 for over 20 minutes. Is that even possible? Scary!
I turned down his basal for 24 hours to avoid all lows until he could recover. I guess it was the baseball. It sure had the opposite effect last weekend.
Andrew's team played two games Saturday morning & then was finished for the day. Will's team had a morning game and two afternoon games. We were set for one very long, hot day at the ballfield. Friday night, the father of one of Andrew's friend asked if Andrew could come back to the hotel & swim & hang out with his son & the other teammates instead of watching Will's games. It definitely would be more fun than baking in the sun for an additional four hours.
I knew I should say yes. The advice is, "If you would have said yes before diabetes, say yes now & find a way to take care of diabetes at the same time." However, the idea sent me into panic mode. I didn't commit, but I reminded him of Andrew's diabetes & and said he would at least need his sister to accompany him if he was going to go swimming. When I talked to Gene on the phone, he wasn't excited about him going swimming without me either. It is very difficult to notice when you are weak and sweaty when you are in the pool. Andrew is usually 50 before he knows that he is low if he is in the pool. And he drops FAST! At 9:15 Friday night, Andrew's BG was 323, & he took a correction. We went downstairs, disconnected the pump, and swam for about 30 minutes. He got ready for bed, checked his blood sugar at 10:19 & was 62. So I'm nervous about letting him swim without me watching...
Saturday, after 3 hours at the ballfield, Kaitlyn and Andrew really want to go with their friend back to the hotel. I explained to the dad my concerns about Andrew, and we agreed on this plan. They would go eat first, & the kids would use the Restaurants app on the iPod to count carbs & bolus. Andrew would check his blood sugar every 30 minutes to an hour while at the pool and, if he was anywhere close to 100, he would eat a snack. I gave him money to stock up on snacks and make sure there was plenty to eat. I made sure the dad had my number, and let them go. I was scared, but I did it.
I said goodbye in the parking lot and then hurried to Will's field, just in time to see him get nailed in the forehead with a ball that bounced up on the lip between the sod & dirt. I watched as the coaches checked on him & Will decided to stay in the game. When he came off of the field though, he began to cry again as soon as he saw me. I settled him down. Soon, the coaches called me back over. Will was dizzy and nauseous. Not good signs after a head injury. It was also very hot outside, and we had been at the ballfield since 8 a.m. When the game was over, the team had a short break before the next game. The rest of the team stayed & watched the other teams play. Will and I left the park to get Will cooled down & hydrated so that I could see if it was heat or injury bothering him. It was heat. My Will returned to normal and was able to play in the last game of the day!
I was exhausted by the time our 8 1/2 hours at the ballfield came to an end. I eagerly returned to the hotel to check on Andrew. I was still in the hallway when Kaitlyn called to say that Andrew's site had come out. No problem. We had it back in very quickly. I asked Kaitlyn if Andrew had gone low. She replied, "Yes, a lot. He spent most of his time sitting out of the pool." So I asked Andrew later how low he had gone. "The meter said Low, under 20!" I checked the meter, and sure enough that's true. Under 20. Under 20. The grace of God is the only reason he didn't have a seizure or pass out right there. In a pool. Pools aren't the best place to have seizures or pass out. No, the idea just sends chills down my spine. He's fine though. He treated himself. When Kaitlyn asked if he was okay, he just said yes, so she didn't know how low he was until he told me. That's not safe. He checked his BG for the first time at the pool at 2:43 & was 39. He treated, but felt worse. Recheck at 2:57 was LOW.
Being that low for that long depletes the body's ability to prevent and recognize lows. Sunday afternoon, he came to me & showed me Dex said that he was going low. He looked low & I wanted to be aggressive because of Saturday's low, so I dropped glucose tabs in his mouth before testing his BG. LOW, under 20 again at 3:55 pm! I gave him juice too. Will was finished, so we headed to McDonald's. Recheck at 4:17 after 31g of fast-acting carbs - LOW, under 20. Seriously? Under 20 for over 20 minutes. Is that even possible? Scary!
I turned down his basal for 24 hours to avoid all lows until he could recover. I guess it was the baseball. It sure had the opposite effect last weekend.
Sunday, June 19, 2011
Rough Day at the Ballfield
Andrew is playing on the all-star baseball team, and his team, which started practicing together Monday, entered a tournament hosted locally this weekend. He enjoyed learning the new rules and even got to pitch the maximum 8 innings per tournament! He and his team did very well, and I am so proud of them!
Diabetes, however, did not play nice today. It's ironic because a parent asked how his blood sugars were early this morning, and I showed off the perfectly straight line on his dexcom. I know, "Pride goeth before a fall," but it was such a pretty graph! They won the first game which, considering we were the only non-travel ball team there, was fantastic! Andrew pitched the last two innings. It was 11:30 or so, and we had an hour break so we headed out for lunch and some air-conditioning. On the way, Andrew complained that his arm hurt. Not his pitching arm - his site arm. When checking on it, it pulled out. We thought it pulled out right then, but in hindsight, I wonder if it had pulled out earlier in the game. We had limited time, so I offered Andrew a choice. Would he prefer to put in a new site, or take a shot for lunch. He chose to take a shot for lunch. It's hard to get to legs or "hips" in public when in baseball pants, so it seemed like a good choice.
We ate at Subway. We've eaten there before, so I'm fairly confident of the carb counts. I used the pump to calculate the dose (8.7), so I didn't make a math error. I had to use the pump cartridge for insulin, so I fiddled forever trying to get insulin without an air bubble in my syringe. I added a little to replace the missed basal, but I didn't replace all of it since he had been active. I figured 9 units of insulin should carry him through the 12:30 game & then we could put on a new site.
Andrew was in the 200s before eating, so I wasn't that surprised when he hit 300's. I showed the pump to a friend who knows another recently diagnosed child. She asked about dex, so we checked and it read 388 going double up (up very quickly). The problem is that it had only been about an hour since the shot, so I really thought it would start to kick in. I pushed Powerade Zero and waited for the insulin to work.
First inning, Andrew pitched again and did a great job. No one scored. I think it was three up, three down. He came in, and I went to check on him. He asked to go to the bathroom. I know that's a symptom of high blood sugar, but it is unusual for him, so that was a red flag. He was still in the bathroom when he was supposed to be on deck. His coach (of one week) had to come looking for him. I was embarassed for him, but there was nothing we could do. Unfortunately, we had three outs before Andrew got to bat, but he still had to head straight to the pitcher's mound. I don't know how he still threw strikes, but he did. When he came back into the dugout, he said, "I'm so thirsty!" and chugged some more to drink. He was first up at bat, so there was no time to do anything but hand me dex. It read, "High" going double up. I wanted to cry. Thirst, frequent urination, high blood sugar... this wasn't good. When he crossed home plate, the opposing team got their third out at first, so Andrew hustled back to the pitcher's mound.
At this point, I didn't know what to do. Part of me said to pull him off the field right now & put in a new site. On the other hand, the tournament games are only an hour and twenty minutes. We had started late and no one started the time on the scoreboard, but surely there couldn't be that much time left in the game. Are minutes worth pulling him off the field? Once the first pitch was thrown, this was his last inning to pitch anyway. I was fighting tears. I lost a few, but I don't think anyone saw them. I know "Andrew can still do anything he wants to do", but I wish he could just go out and play ball like the other kids. I felt like throwing up. I could tell he was getting worse, and I just wanted the game to end so I could get the insulin going again. Andrew moved to short stop and started hanging his head between plays and just not looking right. Coach brought him in off the field, and I was so glad! I jumped off the bleachers and got him.
We immediately looked for a "private" spot in a crowded ballfield. I was so nervous that I put the site in upside down in his arm. :( You want the tubing pointing up so that it can feed through your shirt. We had to redo it. By the time we finished, the game had ended and he had even missed the shaking of hands and team talk. As soon as we had the new site, he did another blood sugar check (599) and we did a full correction. I knew now he would be okay, but it was still hard. When we got home, I had him check ketones to see how bad off he was. MODERATE ketones! How? How did 9 units for lunch allow him to get that kind of ketones? Nine units is alot of insulin, and I still can't believe it wasn't enough. I wonder if the site came out early in the first game and he was pitching without insulin. I feel like I let him down. He's fine now. It took until 6 pm to get him in range, ketone free, and steady.
Yes, the risk of ketones goes up with the pump. A lack of insulin gets serious quickly. With that level of ketones, Andrew shouldn't have been playing. On the other hand, if he had his pump on, I wouldn't be waiting for the shot to kick in. I would have been able to increase his basal rate. When it was obvious that it wasn't working, I could have given a bolus with the remote while he was putting on his helmet and batting gloves. I could have done ... something. I haven't felt that helpless in a long time.
I'm scared too for Fall. We're going to let him play football. I asked about it at our check-up on Thursday. The textbook answer to playing football on the pump is to disconnect the pump (it would be destroyed) and reconnect to replace missed basal every hour. It's probably good advice. However, imagine yourself covered in football pads. Every hour, in front of your teammates, reach down your pants, find your site and connect the tubing. The site is either on your leg or rear. Seriously? There has to be a better plan. We are considering using shots for corrections instead, which is why today's shot for lunch sounded like a good plan. No, I'm not feeling it. Scared to death. I hate diabetes.
Diabetes, however, did not play nice today. It's ironic because a parent asked how his blood sugars were early this morning, and I showed off the perfectly straight line on his dexcom. I know, "Pride goeth before a fall," but it was such a pretty graph! They won the first game which, considering we were the only non-travel ball team there, was fantastic! Andrew pitched the last two innings. It was 11:30 or so, and we had an hour break so we headed out for lunch and some air-conditioning. On the way, Andrew complained that his arm hurt. Not his pitching arm - his site arm. When checking on it, it pulled out. We thought it pulled out right then, but in hindsight, I wonder if it had pulled out earlier in the game. We had limited time, so I offered Andrew a choice. Would he prefer to put in a new site, or take a shot for lunch. He chose to take a shot for lunch. It's hard to get to legs or "hips" in public when in baseball pants, so it seemed like a good choice.
We ate at Subway. We've eaten there before, so I'm fairly confident of the carb counts. I used the pump to calculate the dose (8.7), so I didn't make a math error. I had to use the pump cartridge for insulin, so I fiddled forever trying to get insulin without an air bubble in my syringe. I added a little to replace the missed basal, but I didn't replace all of it since he had been active. I figured 9 units of insulin should carry him through the 12:30 game & then we could put on a new site.
Andrew was in the 200s before eating, so I wasn't that surprised when he hit 300's. I showed the pump to a friend who knows another recently diagnosed child. She asked about dex, so we checked and it read 388 going double up (up very quickly). The problem is that it had only been about an hour since the shot, so I really thought it would start to kick in. I pushed Powerade Zero and waited for the insulin to work.
First inning, Andrew pitched again and did a great job. No one scored. I think it was three up, three down. He came in, and I went to check on him. He asked to go to the bathroom. I know that's a symptom of high blood sugar, but it is unusual for him, so that was a red flag. He was still in the bathroom when he was supposed to be on deck. His coach (of one week) had to come looking for him. I was embarassed for him, but there was nothing we could do. Unfortunately, we had three outs before Andrew got to bat, but he still had to head straight to the pitcher's mound. I don't know how he still threw strikes, but he did. When he came back into the dugout, he said, "I'm so thirsty!" and chugged some more to drink. He was first up at bat, so there was no time to do anything but hand me dex. It read, "High" going double up. I wanted to cry. Thirst, frequent urination, high blood sugar... this wasn't good. When he crossed home plate, the opposing team got their third out at first, so Andrew hustled back to the pitcher's mound.
At this point, I didn't know what to do. Part of me said to pull him off the field right now & put in a new site. On the other hand, the tournament games are only an hour and twenty minutes. We had started late and no one started the time on the scoreboard, but surely there couldn't be that much time left in the game. Are minutes worth pulling him off the field? Once the first pitch was thrown, this was his last inning to pitch anyway. I was fighting tears. I lost a few, but I don't think anyone saw them. I know "Andrew can still do anything he wants to do", but I wish he could just go out and play ball like the other kids. I felt like throwing up. I could tell he was getting worse, and I just wanted the game to end so I could get the insulin going again. Andrew moved to short stop and started hanging his head between plays and just not looking right. Coach brought him in off the field, and I was so glad! I jumped off the bleachers and got him.
We immediately looked for a "private" spot in a crowded ballfield. I was so nervous that I put the site in upside down in his arm. :( You want the tubing pointing up so that it can feed through your shirt. We had to redo it. By the time we finished, the game had ended and he had even missed the shaking of hands and team talk. As soon as we had the new site, he did another blood sugar check (599) and we did a full correction. I knew now he would be okay, but it was still hard. When we got home, I had him check ketones to see how bad off he was. MODERATE ketones! How? How did 9 units for lunch allow him to get that kind of ketones? Nine units is alot of insulin, and I still can't believe it wasn't enough. I wonder if the site came out early in the first game and he was pitching without insulin. I feel like I let him down. He's fine now. It took until 6 pm to get him in range, ketone free, and steady.
Yes, the risk of ketones goes up with the pump. A lack of insulin gets serious quickly. With that level of ketones, Andrew shouldn't have been playing. On the other hand, if he had his pump on, I wouldn't be waiting for the shot to kick in. I would have been able to increase his basal rate. When it was obvious that it wasn't working, I could have given a bolus with the remote while he was putting on his helmet and batting gloves. I could have done ... something. I haven't felt that helpless in a long time.
I'm scared too for Fall. We're going to let him play football. I asked about it at our check-up on Thursday. The textbook answer to playing football on the pump is to disconnect the pump (it would be destroyed) and reconnect to replace missed basal every hour. It's probably good advice. However, imagine yourself covered in football pads. Every hour, in front of your teammates, reach down your pants, find your site and connect the tubing. The site is either on your leg or rear. Seriously? There has to be a better plan. We are considering using shots for corrections instead, which is why today's shot for lunch sounded like a good plan. No, I'm not feeling it. Scared to death. I hate diabetes.
Saturday, June 18, 2011
Thankful for a "Normal" OGTT for Kaitlyn!!!
Yesterday was Vanderbilt Day. Kaitlyn went for her oral glucose tolerance test, & Andrew had his check-up. Last year, Kaitlyn's ogtt was so high that I thought that a type 1 diagnosis for her was right around the corner. Six months ago, her fasting glucose was in the pre-diabetic range for the first time, but her two hour number was much better, though still pre-diabetic. We don't have official lab results, but the meter read 95 (normal) before starting the test. We tested her blood sugar again after 2 hours on our meter just so we wouldn't spend the next few days worrying about whether the phone would ring with bad news. It was past the 2 hour mark, but her number was 125. That's NORMAL!!! She hasn't had a normal test in years!!!! A year ago the researchers commented that it would be interesting to see if she made it through puberty. Insulin needs really shoot up during puberty & blood sugars are difficult to manage. I understand that the antibodies are still there, but I am so thankful that the Lord has given her this time and that she is doing so well! Praise God!
Andrew is doing well too. His A1c (3 month average of blood sugars) was down from last time & lower than Dex predicted. He is growing well. His alarm is going off now though...
Okay, I'm back. His continuous glucose meter (cgm) said his blood sugar was 45. I had already given him juice, so I needed to recheck him before treating again. I had to pull his hand out from the covers. He opened his eyes and stared at me strangely. Nighttime lows are the worst because you never know if your child is out of it because he's that low or if it's just because you woke him in the middle of the night. I asked if he was okay. After a long pause, he replied, "I guess so." He wasn't helping with the finger prick like normal, so I just took his hand. He pulled our hands up to his face and began kissing my hand! That's a first. I can honestly say he has never kissed me while I'm trying to prick his finger before. He won't remember it & will deny it in the morning. His blood sugar was already coming up. It's 71 now, and I fed him a complex carb (yes, he eats in his sleep), so he should be fine.
Andrew is doing well too. His A1c (3 month average of blood sugars) was down from last time & lower than Dex predicted. He is growing well. His alarm is going off now though...
Okay, I'm back. His continuous glucose meter (cgm) said his blood sugar was 45. I had already given him juice, so I needed to recheck him before treating again. I had to pull his hand out from the covers. He opened his eyes and stared at me strangely. Nighttime lows are the worst because you never know if your child is out of it because he's that low or if it's just because you woke him in the middle of the night. I asked if he was okay. After a long pause, he replied, "I guess so." He wasn't helping with the finger prick like normal, so I just took his hand. He pulled our hands up to his face and began kissing my hand! That's a first. I can honestly say he has never kissed me while I'm trying to prick his finger before. He won't remember it & will deny it in the morning. His blood sugar was already coming up. It's 71 now, and I fed him a complex carb (yes, he eats in his sleep), so he should be fine.
Thursday, June 9, 2011
I Like Your Mom!
We are finally out of school, so I should catch up on this blog soon. Here is the quoteof the day:
This morning, a bagger at the grocery store was helping us unload the cart for purchasing when I spotted the sale on candy. I turned to Andrew and said, "There is a sale on starbursts and skittles. We're getting low so let's stock up." I've grown accustomed to the strange things that only a parent of a child with diabetes would say, so I chuckled when the bagger turned to Andrew and said, "I like your mom!" Realizing that he mistook me for a cool mom who actually buys candy for fun, I clarified that I had to buy candy because my son is diabetic. That sounded crazy too even though it is true. Safety step #1 when on insulin is to always have a source of fast-acting sugar in case your blood sugar goes too low. At home, we use glucose tabs and juice. The ballfield on the other hand ...
Andrew pitches and hits better if I can keep his blood sugar close to normal. Insulin, heat, exercise, excitement, and adrenaline are an interesting mix, so sometimes I need small doses of sugar to keep him from going low without spiking too high. Chocolate won't survive the heat, so skittles and starburst are the portable & tolerable glucose sources of choice. He'd probably rather run high through the game than have to eat glucose tabs all the time. Now, I'm stocked up & the bagger likes me today!
This morning, a bagger at the grocery store was helping us unload the cart for purchasing when I spotted the sale on candy. I turned to Andrew and said, "There is a sale on starbursts and skittles. We're getting low so let's stock up." I've grown accustomed to the strange things that only a parent of a child with diabetes would say, so I chuckled when the bagger turned to Andrew and said, "I like your mom!" Realizing that he mistook me for a cool mom who actually buys candy for fun, I clarified that I had to buy candy because my son is diabetic. That sounded crazy too even though it is true. Safety step #1 when on insulin is to always have a source of fast-acting sugar in case your blood sugar goes too low. At home, we use glucose tabs and juice. The ballfield on the other hand ...
Andrew pitches and hits better if I can keep his blood sugar close to normal. Insulin, heat, exercise, excitement, and adrenaline are an interesting mix, so sometimes I need small doses of sugar to keep him from going low without spiking too high. Chocolate won't survive the heat, so skittles and starburst are the portable & tolerable glucose sources of choice. He'd probably rather run high through the game than have to eat glucose tabs all the time. Now, I'm stocked up & the bagger likes me today!
Thursday, March 17, 2011
Good Day in Franklin!
Andrew had a good check-up today! I checked him out of school, we stopped for lunch at Subway, and then hit the Galleria before our appointment. Andrew has grown and needs new shorts with pockets. Pockets are very important if you have to carry a pump & cgm all the time! When he got to his appointment, his blood pressure was great, which was a relief to me! His A1c was higher, but it was an exact match to his 3 month CGM average! That meant that we were prepared for the number, and it also reinforced that Dex is doing a good job. I also feel more empowered to make changes than ever before due to two relatively new things in our life:
1. Waking to CGM - Being able to wake up to Dex alarms allows us to strive for better nighttime control. We lowered his range from 150 +/- 30 to 130 +/- 20. That makes 150 our upper tolerance limit rather than the target.
2. Diasend! Diasend is new online software service provided by Animas for uploading our pump. Since all numbers taken from our meter are automatically sent to the pump, this downloads every BG, bolus, basal, etc. Diasend is so much better at organizing the data so that I can make good decisions. I admit that we rarely log now that we are on the pump & CGM & everything can be downloaded. The downside is that columns of numbers really show trends well. Diasend sets this up in a perfect, logical fashion! This software was just released this month for Animas Ping & I'm already a fan!
1. Waking to CGM - Being able to wake up to Dex alarms allows us to strive for better nighttime control. We lowered his range from 150 +/- 30 to 130 +/- 20. That makes 150 our upper tolerance limit rather than the target.
2. Diasend! Diasend is new online software service provided by Animas for uploading our pump. Since all numbers taken from our meter are automatically sent to the pump, this downloads every BG, bolus, basal, etc. Diasend is so much better at organizing the data so that I can make good decisions. I admit that we rarely log now that we are on the pump & CGM & everything can be downloaded. The downside is that columns of numbers really show trends well. Diasend sets this up in a perfect, logical fashion! This software was just released this month for Animas Ping & I'm already a fan!
Wednesday, March 9, 2011
Sweet Sleep Solution!!!
WOO HOO! I SLEPT FOR 5 HOURS STRAIGHT LAST NIGHT!!! Oh, sorry for "yelling", but I want to shout it from the rooftops! I have found a way to wake up to the Dex alarms!!!
Imagine never getting more than three hours of sleep at a time. Gene and I have been getting up at 2 a.m. for most of the last three years. In the last few nights, Andrew has had two nice stable nights, one where he was HIGH OVER 400 going up, and one where he had been under 55 for an hour when I checked him at 2 am. Dex was alarming, but not waking either of us. We are lucky that he wasn't seizing then, and I shudder to think what could have happened if he had been left until morning. Nighttime checks aren't necessary for everyone, but they've proven to be necessary for Andrew many times. It's exhausting though. Last week, a friend with older children made an innocent comment about having to stay up later with teenagers to be there when they really need you, and I just replied, "I Can't!" It was an epiphany. Figuring out my sleep issue isn't just for me. It's necessary for me to be able to parent these precious kids now while I have the opportunity. They are growing up so fast! I started looking at something I had heard of on CWD. Here is the solution:
Sonic Alert Universal Sound Signalerhttp://www.amazon.com/Sonic-Alert-Universal-Sound-Signaler/dp/B003ESXF6Q/ref=pd_sim_hpc_6
Sonic Alert SB1000ss Sonic Boom Loud Vibrating Alarm Clock with Built In Receiverhttp://www.amazon.com/Sonic-Alert-SB1000ss-Vibrating-Receiver/dp/B000EX9K40/ref=wl_it_dp_o?ie=UTF8&coliid=I748MKP24FM5O&colid=6Z8N3U220YRV
The universal signaler sits beside Andrew's bed with the Dex in front of it. When the signaler goes off, it signals the vibrator in the alarm clock across the house in my room! The super shaker is a round circle that slides under my pillow & shakes when the dex beeps. I haven't figured out if I can get the alarm clock to go off, but the super shaker does the trick! I thought it might give me a heart attack, but it isn't that bad. It's also something that Andrew can use when he goes to college to wake up for lows without bothering his roommates. I slept sounder last night than I have in ages. I wasn't even listening for an alarm. I just slept. At 3:30 in the morning, I was woken by something other than Andrew, but I still felt great! I just can't explain how wonderful this is!!!! It's not like I'll sleep every night from now on. When Andrew's BG isn't stable, I'll be waking to the alarms, but that's what he needs. But when Andrew does have a good night, we will all get sleep! That's something I can live with!
Imagine never getting more than three hours of sleep at a time. Gene and I have been getting up at 2 a.m. for most of the last three years. In the last few nights, Andrew has had two nice stable nights, one where he was HIGH OVER 400 going up, and one where he had been under 55 for an hour when I checked him at 2 am. Dex was alarming, but not waking either of us. We are lucky that he wasn't seizing then, and I shudder to think what could have happened if he had been left until morning. Nighttime checks aren't necessary for everyone, but they've proven to be necessary for Andrew many times. It's exhausting though. Last week, a friend with older children made an innocent comment about having to stay up later with teenagers to be there when they really need you, and I just replied, "I Can't!" It was an epiphany. Figuring out my sleep issue isn't just for me. It's necessary for me to be able to parent these precious kids now while I have the opportunity. They are growing up so fast! I started looking at something I had heard of on CWD. Here is the solution:
Sonic Alert Universal Sound Signalerhttp://www.amazon.com/Sonic-Alert-Universal-Sound-Signaler/dp/B003ESXF6Q/ref=pd_sim_hpc_6
Sonic Alert SB1000ss Sonic Boom Loud Vibrating Alarm Clock with Built In Receiverhttp://www.amazon.com/Sonic-Alert-SB1000ss-Vibrating-Receiver/dp/B000EX9K40/ref=wl_it_dp_o?ie=UTF8&coliid=I748MKP24FM5O&colid=6Z8N3U220YRV
The universal signaler sits beside Andrew's bed with the Dex in front of it. When the signaler goes off, it signals the vibrator in the alarm clock across the house in my room! The super shaker is a round circle that slides under my pillow & shakes when the dex beeps. I haven't figured out if I can get the alarm clock to go off, but the super shaker does the trick! I thought it might give me a heart attack, but it isn't that bad. It's also something that Andrew can use when he goes to college to wake up for lows without bothering his roommates. I slept sounder last night than I have in ages. I wasn't even listening for an alarm. I just slept. At 3:30 in the morning, I was woken by something other than Andrew, but I still felt great! I just can't explain how wonderful this is!!!! It's not like I'll sleep every night from now on. When Andrew's BG isn't stable, I'll be waking to the alarms, but that's what he needs. But when Andrew does have a good night, we will all get sleep! That's something I can live with!
Sunday, February 20, 2011
5 days without Dexcom!
Wow! How dependent on CGM I've become! Our Dexcom receiver quit working yesterday. The screen blacked out & the buttons started flashing. Dexcom technical support was kind & promised to send a new one out overnight - as soon as the shipping department comes into work, which will be Tuesday because of President's Day. So we are without Dexcom from Saturday until Wednesday. I miss it so much! I knew I loved it at night, but apparently we're pretty dependent in the daytime too. Before he goes out to play, I like to get a Dex reading. A couple hours after meals we check to see if he needs a correction. We don't treat based on the CGM, but it keeps us from being surprised by high numbers. Last night, he went to bed at 137 at 8:00, but was 406 at 1:48. If his dex had been working, we would have checked before we went to bed & corrected then. We could have done a BG, but how many times a night is it okay to prick a sleeping (or at least he was) child?
One good thing is that I should be able to get spot trends. Sometimes with extra info, we do enough interventions that we don't see overall trends like "he's high at dinner every day", becuase we correct before he gets too high. There's nothing to stop us now. Well, I think last night's site may have gone into muscle & is slow absorbing, which is contributing to the highs. Andrew thinks it's fine (he doesn't want a new site) & claims he just needs more basal. I don't want to adjust basal without the safety of Dex. How did I get so dependent??? I'm so looking forward to Wednesday & hoping that Andrew doesn't enjoy the break too much!
One good thing is that I should be able to get spot trends. Sometimes with extra info, we do enough interventions that we don't see overall trends like "he's high at dinner every day", becuase we correct before he gets too high. There's nothing to stop us now. Well, I think last night's site may have gone into muscle & is slow absorbing, which is contributing to the highs. Andrew thinks it's fine (he doesn't want a new site) & claims he just needs more basal. I don't want to adjust basal without the safety of Dex. How did I get so dependent??? I'm so looking forward to Wednesday & hoping that Andrew doesn't enjoy the break too much!
Saturday, January 29, 2011
Link to Joe's Video
Tuesday, January 25, 2011
Three Year Anniversary
Unbelievable!!! Three years ago today, Andrew's life changed forever. Our whole family changed forever. Diagnosis Anniversaries are always bittersweet. I'm so thankful for how far we've come and the grace that God has extended to us. Yet, I still HATE diabetes. I hate the years it stole from Andrew's life expectency. I hate the joy it removes from his life now because of the ups and downs of blood sugar. Don't get me wrong. Andrew handles all of this so very well. He "does anything he wants to do". But, it makes a difference.
Will is playing first grade Upward basketball this year. He's having the time of his life, and the joy is obvious. Sometimes, his joy reminds me of what Andrew lost. You see Andrew was diagnosed during Upward Basketball of his first grade year. It was the first place that I knew something was wrong. I didn't notice classic medical symptoms like extra thirst or urination. I just had a sick feeling in my stomach that something was wrong. He just didn't look and act like himself. After his diagnosis, I learned that his blood sugar would shoot up really high, like 400-600 high, during games. And that was on insulin. No wonder something seemed wrong. Andrew loves sports, and he's pretty good at them. But he has very few games that he looks joyful all the way through. If he looks like he's having fun, his BG is normal. Most of the time, adrenaline shoots him high & you can see his body is working hard. His expression is one of concentration. Limp is most dangerous. That's low.
Tonight, we went to an awards ceremony for the JDRF Walk. There were so many cute little kids with pumps strapped on them or taking shots for dinner. They wore smiles on their faces, but it broke my heart. I could have cried right there, but that wouldn't help the kids. Tomorrow will be a new day.
I am looking forward to our 4th year. Year one was survival, trying to learn diabetes, have a baby, etc. Since Andrew started on the pump right at a year, his second year was about learning to live on a pump. Year three, I joined CWD forums, read all their recommended books, discovered & ordered Dex, and learned the things not taught by doctors. This year, I hope to work more on diet. I still hate diabetes, but it is more routine now. Andrew's site fell out at school today. He changed it himself. Then he was 501 after lunch and the nurse called for advice while I was teaching class. The tiny 0.65 correction sent him low after he got home. He treated himself & told me on the phone. None of these events sent the slightest adrenaline through my system. All in a days work as a pancreas. So we have made progress. Thank you, God, for carrying us safely through another year!
Will is playing first grade Upward basketball this year. He's having the time of his life, and the joy is obvious. Sometimes, his joy reminds me of what Andrew lost. You see Andrew was diagnosed during Upward Basketball of his first grade year. It was the first place that I knew something was wrong. I didn't notice classic medical symptoms like extra thirst or urination. I just had a sick feeling in my stomach that something was wrong. He just didn't look and act like himself. After his diagnosis, I learned that his blood sugar would shoot up really high, like 400-600 high, during games. And that was on insulin. No wonder something seemed wrong. Andrew loves sports, and he's pretty good at them. But he has very few games that he looks joyful all the way through. If he looks like he's having fun, his BG is normal. Most of the time, adrenaline shoots him high & you can see his body is working hard. His expression is one of concentration. Limp is most dangerous. That's low.
Tonight, we went to an awards ceremony for the JDRF Walk. There were so many cute little kids with pumps strapped on them or taking shots for dinner. They wore smiles on their faces, but it broke my heart. I could have cried right there, but that wouldn't help the kids. Tomorrow will be a new day.
I am looking forward to our 4th year. Year one was survival, trying to learn diabetes, have a baby, etc. Since Andrew started on the pump right at a year, his second year was about learning to live on a pump. Year three, I joined CWD forums, read all their recommended books, discovered & ordered Dex, and learned the things not taught by doctors. This year, I hope to work more on diet. I still hate diabetes, but it is more routine now. Andrew's site fell out at school today. He changed it himself. Then he was 501 after lunch and the nurse called for advice while I was teaching class. The tiny 0.65 correction sent him low after he got home. He treated himself & told me on the phone. None of these events sent the slightest adrenaline through my system. All in a days work as a pancreas. So we have made progress. Thank you, God, for carrying us safely through another year!
Saturday, January 8, 2011
Good Results for Kaitlyn's OGTT
Kaitlyn's results are in & they are fantastic!!! The lab had her fasting BG as 91, so even that number was normal. Her other numbers were 30 min- 163, 60 min 161, 90 min 161, and 120 min 141. A1c 4.9. These numbers are better than they were two years ago! They're much, much better than the 88, 169, 221, 232, & 194 we saw in June. Yeah!! Thanks for your prayers for her!
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