Ayden Jane's IGF-1 level is through the roof! Upper limit for reference range for her age is 284 and her IGF-1 came back 521! We did a few other tests and there are clues throughout that show that Ayden Jane has just not yet recovered fully from being sick. The poor kid!
I suppressed my first inclination to ... PANIC! at the idea that her IGF-1 is so high. I took a deep breath, thought through all the labs and e-mailed them to Dr. Miller.
I have to say that when we had them done on Tue. I thought that Ayden Jane was back to her old self. This weekend I would have to say there have been significant improvements even since Tue. in behavior, attention span, interest in food, sleeping.... More proof that this kid is having a hard time putting the illness behind her completely.
In the end I think there is just a lot to be learned from the whole thing. Ayden Jane has always shown a bit of this whole mess when she gets sick, but it is usually short lived and she returns to her old self. We saw when she was tiny that little illnesses just took her body a long time to fully recover from. Now we can see it in lab work as well and know that I am not just crazy and thinking I see things!
Basically, Dr. Miller explained it something like this: Illness causes insulin resistance due to inflammation in the body, so she felt more hungry (inflammation = blocked receptors for insulin in muscles, liver, and brain = high insulin levels in the body = low blood sugars when insulin peaks at inappropriate times = insulin resistance = brain doesn't get complete message of satiety = increased hunger) and the insulin resistance causes increased insulin levels in the body which increase IGF-1 levels which is why hers are so high.
So, my next question was what to do in the future to keep this downward spiral from tumbling out of control? One possible answer is that a steroid should be given (likely at a minimum dose) when she first shows signs of illness to keep the inflammation under control and stabilize blood sugars. I need to ask if this is all related to CAI issues in PWS or if this is just a quirky Ayden Jane thing.
We plan to rerun the labs after the Holidays. Dr. Miller recommended to have her healthy for 2-4 weeks to be sure the labs are valid. Here's hoping for a healthy Christmas!