Finally after nearly 3 months of dealing with lows, both kids are trending up in their blood sugars. Noses are not visibly running any more on a daily basis and all stomach bug issues are gone. Yesterday Andy had a huge spike, mainly brought on by the fear that has gripped me over the last few weeks. Even after dropping him to the lowest dose pill and splitting it in half, some days he would come home for lunch and be in the 50-70 range. So when he came to breakfast and tested at 129, I decided not to give him any meds with his breakfast because I didn’t want to risk him going low at school. When he sat down for lunch, he was at 544! I was shocked, washed his hands and checked him again, to the tune of 547. Gave him a full pill and an hour later, we saw the first HI on the meter that we have seen in more than 3 years. Another hand washing confirmed that he was indeed HI (over 600).
I am happy to admit that I did not panic. It did run through my mind that I didn’t have any insulin in the house, but I pushed that thought away. I reminded myself of all the articles I’ve read about Neonatal Diabetes and how sulfonylureas work in their bodies. I knew that, unlike a shot of insulin, the pill would take a little longer to work, especially since he is on a reduced dose and doesn’t have a lot built up in his system right now. Sure enough, by 2PM, he was down to 318. He ate a wonderful dinner and had a snack later before bed so I gave him another 1/2 pill and he woke up this morning at 208. Not a wonderful number and definitely not in the ultimate range, but it tells me that his body is going back to “normal” (whatever that is) and the slow increase of his meds is going well. Maybe we will be able to get both kids back to their previous dose over the next couple of months. At least the lows are gone, FINALLY!
One of my passions with Neonatal Diabetes is in research and finding other families so they can be connected and find the support that wasn’t there just a few years ago when we started on our rare journey. It amazes me that the more families we find, it seems the more genetic mutations start showing up. Over the last 18 months since starting this blog, I have connected to several other families who have either found out they have a form of ND or are being tested. There is still so much that is unknown about it and the doctors are learning right along with the parents and patients. I was able to connect to one family whose daughter has Transient Neonatal Diabetes and started going into remission just as she started glyburide and now generations of family members are either transitioning off insulin or being tested for the genetic mutation.
Then there are the unusual cases of familial diabetes that even the doctors can’t explain. One baby was started on glyburide and it seemed to be working in the beginning but after a period of time it just wasn’t working as efficiently so the baby is now back on insulin. That is also another case of other family members being diagnosed young. Maybe someday they will have a miracle like ours, but maybe in a different way. My heart goes out to that family.
And finally there are those who are waiting. One other family is waiting for the test to come back. A test for the baby and the parent. Another case of a family history. And one family whose baby was diagnosed after 6 months of age, but just not presenting like a typical Type 1 so the doctors are questioning and testing, just to be sure.
I think that is what needs to happen. Even if these tests come back negative. Even if the tests show a possible genetic mutation, but the pills don’t work. Every test helps the doctors understand this rare diabetes even better. Every test helps another family know that they did everything in their power to make a better life for their child (or themselves). More than four years ago when I was getting Andy tested, I told myself that I was doing it for one reason. I didn’t want to find out 20 years from now that he could have lived a different life. I wanted to be sure that he was on the best type of therapy for his diabetes. That is the reason this test is so important. To Know.
My thoughts and prayers are with all the families who are waiting, transitioning, and finding out today. If you need support of any kind, please don’t hesitate to ask. If I can’t answer from my own experience, I can direct you to a doctor or family who can.