The Appointment

Daniel had an Endo appointment this past week. I never really dread these meetings anymore because A) we love the new doctor and B) we are pros at this thing now, right? However, that A1c number still feels like a report card for me and since the last visit we have really been focused on the whole Asperger's thing. Daniel doesn't really care one way or the other as long as their is no blood draw and he gets to go to the playroom.

For two months Diabetes has in large part been on auto-pilot. We have not logged as we should, we did the site changes and all the BG checks, but just sort of winged the results. He was getting more exercise because as part of our AS work he was spending more time outside. He already has a pretty good food choice thing going on, but without logging who knows. I was pretty nervous about the visit. I tried to throw together his logs the night before, using all four meters that have been in use everywhere and Zak, who saves me with his memory for insulin doses.


When I really realized how little attention we have been giving to diabetes over the last few months there was this mega wave of guilt. But, then I was blown away by thinking that a few years ago I would never have dreamed there would be a time that it would fall to the background like this. Don't get me wrong, it can still be overwhelming and if I give it enough brain power it would definitely still send me into tears in a heartbeat. However, even though I felt like we were taking a break from it a bit, Daniel did not.


Even though I was not logging, or following trends like usual, nothing had really changed for my son. He was still feeling it. He was still poking his finger the same, he was still going through site changes as normal. He never really got a break from any of it. He still had to make the dentist appointment and the eye appointment like normal. The highs, the lows, they still felt the same to him. OK, there is that guilt thing again.


Once the doctor checked him over so he could go play while we talked, I immediately started trying to explain that diabetes had been on the back burner for a while. She gave me a nod of understanding and then dug into the numbers. Then a strange thing happened. His A1c was 7.3! How in the world did that happen? That is right in line with with the numbers he usually has when we are beating our heads against the wall trying to stay on top of it all. The Dr. just simply said, "If that is being on the back burner then you guys need to come teach a class for us." Honestly, I don't think we could have ever gotten to this point if it had not been for the support of our friends in the CWD chatroom, where I have been absent for some time, and the awesome people here in the D-OC. We have learned so much from all of you, especially that the sky is not falling. Thank you.


At this point I had relaxed a bit, so when she started going over his logs it was like second nature in explaining the trends. "Yes he was running high for a few days but if you will notice it was just before school started and he was excited and nervous. If you will look at the days after school started you will see that he calmed down and so did his numbers." and "Oh, yes he has been waking up a bit on the high side as of late, this is, I believe, in part to the new schedule and because his hormones are starting to kick in. I wanted to give the school schedule a week to settle before making any adjustments." It was like we never took a break at all. Maybe it just felt like a break, I guess we really were still on top of it but now it just seems more natural. Almost four years in and we are finally able to "coast" now and again without the world coming to an end.


We discussed the CGMS and she is in total support of it. She thinks it would be a great tool for Daniel, even if only like a week a month, so we can see the nights and how his numbers and Asperger's affect each other. We will see what the insurance says. After all the drama with the difference in meters, I would love to see how they match up with the CGMS. I know that the numbers would be coming from different fluid and the CGMS is delayed compared to the meters but I think it would be interesting to see anyway.


I also asked about Symlin for children. Not that I want him to have to deal with anymore than he already is but I just don't get it. A person with Type 1, be they children or adults, is missing the same things from their pancreas. Insulin and Amylin, correct? If replacing both is beneficial to adults, why not children? I understand it would be more shots but if it can protect him long term, wouldn't that be worth it? The answer was that it simply has not been approved for kids yet, it takes much more testing to be approved for children than for adults. You would think that as money hungry as the Big Pharm is they would jump on this. I mean after all it is a whole new market group for them.


They won't give us a cure, they just keep coming up with new gadgets and meds that will make more money, but they make it impossible for everyone to have access to these items, I don't get it. Where is the big leap in understanding that preventative care and cures are a good thing? Maybe they have never heard their own children say things like, "I hate diabetes" or the worst one, "I hate my life."

So what we do is try to change Daniel's self talk, keep praying really hard for Dr. Faustman and her work, and take joy in the small victories like a good Endo appointment.