If a T1D sleeps until 9 a.m., he might be low...

Andrew sometimes sleeps in until 8:30 or so. I confess that I had been in his room & seen that he was breathing, not sweating, etc. However, if someone pricks your finger & begins squeezing for blood, sleeping in is out of the question, so I tried to wait. At 9 a.m. though, Gene checked & sure enough, he was low. Sleepyness is a symptom of lows. Luckily, no seizure or anything too scary. He did say he felt like he had been low for awhile.

I might be more freaked out except that we've started the process of getting a CGM this week. CGM stands for a continuous glucose monitor. It has several components - a sensor that sits under the skin and measures glucose in the interstitial fluid, a transmitter that connects to the sensor and is worn on the body, and a receiver that must be within a few feet of the transmitter. It is one more site for Andrew to wear. Look back at the Bionic Boy post. We're getting Dexcom, so it will look different, but it's the same idea.

The process will probably take awhile, but I don't know how long. We have to get all the proper paperwork done and get insurance to approve it. I think many get denied at first and have to appeal. We don't even have our paperwork yet. It starts with Dexcom getting the doctor prescription & contacting insurance. We will see!

Finally Peaceful Days

So, I didn't really take the mental vacation that I said I would in the last post. I contacted the doctors in Birmingham & got more information from them. I stayed up late at night researching immunology so I could understand medical reports. I got excited about Dr. Faustman's research, learned about HLA.... Right now, though, I'm not ready to take the risk involved. Maybe Diamyd. But not Teplizumab. I'm glad I had the time to do the research & time to calm down enough to realize that maybe I should say no. Anyway, I've come to a peaceful place where internet research no longer calls to me. Maybe it will put it all in perspective if/when she gets a diagnosis. It will be much simpler to deal with diabetes & not the clinical trials, two weeks of hospitalization, illness, etc.

Thanks also for your prayers for Andrew! His nighttime basals are finally working! He has been between 80 & 150s all night all week! I have my 5 nights in a row, so maybe we can start sleeping through the night. What were the rules? Check him only when he has been swimming, had ball practice, late site change... A late site change today means I check him tonight, but we may get some sleep between now & when school & football starts. I wonder what it feels like to sleep through the night???

A Perfect Test!

Kaitlyn's "test" this morning was perfect! Her fasting BG was 94. She had a Dr. Pepper & Hershey's bar for breakfast. She didn't feel very good, but her numbers were fine. I tested her BG just before getting the "sample" for the doctor & it was 142! I tested ketones myself so there would be no surprises. They were negative. At two hours, her BG was 105 where Normal is less than 140! Gene took the sample to the doctor & it was negative for both glucose & ketones! It's really miraculous that she handled that load so well when I saw a 227 yesterday. I expected a little spilt glucose. We are in a clear holding pattern. For now, I'm taking a mental vacation from Kaitlyn's issues. We will watch for symptoms, but otherwise I want her to enjoy the (diabetic) carefree time that she has left. Andrew is up & down horribly so it's time to focus on trouble shooting for him anyway!

Glucose Test of Sorts Tomorrow

Kaitlyn went to her pediatrician for a stye in her eye today, so I filled the doctor in on the OGTT. The doctor asked if Trialnet had done any urine samples, and I said no. She wanted one, but Kaitlyn had just gone. So tomorrow we do the coke & candy bar test & give the doctor a sample. We've agreed to first thing in the morning since we have afternoon plans. I almost don't want to. I know morning results won't be good. We checked her numbers today after a later meal & they soared up quickly, but were within range within an hour. I don't think they would give insulin for that. If she is diagnosed before using insulin then she won't qualify for any of the trials. You have to be newly diagnosed & using insulin. I looked back on previous posts praying for open & closed doors. I have to accept that. I guess we will wait and see what tomorrow brings.

Untethered Ended

Well, pumping untethered lasted less than five days. When it came time to give the Lantus shot this morning, Andrew asked, "Can I just go back on the pump for today?" I told him that it took Lantus a few days to level out, so he can't go back & forth based on whether his shorts have pockets. (Yes, that is an issue. He doesn't really like the pump pouches, even though I've bought four different kinds. The pump has to go somewhere. I only buy him shorts with pockets, but he has some hand-me-downs from Ryan that don't.) He opted for the pump. He had a nice vacation from having to carry the pump around, but the shots hurt. Pumping untethered was nice - the safety of long-lasting insulin with the accuracy of a pump and flexibility of multiple boluses. In the end, though, as long as Andrew takes care of his body and gives it the insulin it needs, he gets to choose how it gets there.

Research for Kaitlyn is still mixed. Here are some posts from some kids who had teplizumab and are doing great. Andrew never had much of a honeymoon, so the numbers these kids are seeing are enviable. I'd love that for Kaitlyn.
http://forums.childrenwithdiabetes.com/showthread.php?t=41829&highlight=teplizumab
However, the side effects are frightening! If it were a cure, I'd sign up in a heartbeat! However, it only slows the disease. No cure. I'm still not sure.

My Brain Hurts!

With Kaitlyn's impending diagnosis, I'm doing lots of research into clinical trials. Most are only open to new diagnoses. There is nothing for Andrew now. There are several promising trials - Teplizumab & Diamyd are two possibles. However, my brain hurts from trying to understand their benefits along with side effects like transient cytokine release symdrome, & lymphopenia. Please pray for wisdom and open and closed doors as we research for Kaitlyn. We were offered a trial (probably Teplizumab) when Andrew was diagnosed, but it was at Yale. With everything else we were trying to absorb, messing with his immune system & spending two weeks in the hospital in Yale was more than we could stomach. Now, I have heard of the benefits of the drug (C-peptide/insulin production remaining at 5 years!) and it's available at UAB. Still 2 weeks possibly all hospitalized. If we do that, it would be nice to get it done before school starts. However, we have to wait two weeks because it has to be 8 weeks since her last immunization & she just got a booster for middle school six weeks ago. I'm done for today, but more research tomorrow!