We got the results of Ayden Jane's IGF-1 testing. Basically, that is the measure to see how to dose growth hormone (gh). Right now in Ayden Jane it is sort of also a measure of how she is using gh. Her levels are still way too high even after we have dropped her dose and she has had time to recover from this winter's illness. Not good.
We are still seeing some effects in her that show that she is not using the gh well. For example, she has added weight (the enemy of PWS) and her tone is not as good. Also she is back to napping longer and every day. She also goes to bed earlier.
So, we are on a hunt to figure it all out. Sleep apnea could play a part in inefficient use of gh so with any luck the tonsils and adenoids coming out could help a lot! I sure hope it is that easy...
Still will need to track down the poor response to fighting bacterial infection though.
Again, remind self constantly: AJ is smart, funny, active, coordinated, verbal.... we just need to figure out what to tweak and all is well.
Humm, I am by no mean a doctor, but if you don't sleep well, you won't fight infections and viruses very well and you easily become sick.
ReplyDeleteI think that investigating sleep issues can only help her (my gut feeling is that fighting sleep apnea can only help with fighting infections, as she will sleep better), before launching other complicated investigations.
I cross my fingers for AJ and for you.
I think one of my biggest frustrations about PWS is just that it's like a big game of, "which came first, the chicken or the egg?" There are so many explanations for what causes what, and it's difficult to find out where it all begins and ends. Keep us updated.
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