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!
Friday, December 16, 2011
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!
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