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!
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