Thursday, June 27, 2013


Well, we had Ayden Jane's labs done.  There is some great news and some frustrating things -- as usual.

First the great news.  Her insulin level is down quite nicely to 9.3.  I am honestly not totally sure what the significance of this is, but I know that when her labs were awful during the 'winter of infection' and for many, many months after we were well into the teens.  Dr. Miller told me she wanted to see it down under 10 and I honestly thought she was crazy...  Woo Hoo!  We did it!  Other good things are Vitamin D looked good (of course, it is June and we are outside a TON) and thyroid was good.  It's kind of funny that her thyroid is doing so well.  It is commonly a problem in PWS and 2 out of 3 of my non PWS kids have a low thyroid. 

Not so great is that her eosinophils were high.  What's an eosinophil you ask?  It is a type of white blood cell that typically signifies and allergic reaction.  We tried to trace down allergies back when her value was 8.9.  Nothing.  She was not even mildly allergic to anything they can test for!  Well, now her value is at 12.6!  I asked Dr. Miller about it and her response was interesting.  She said that a GI doctor from Hopkins who is looking into PWS thinks that the gut is causing high eosinophil values in some with PWS and is working on how to fix it.  So, at least Ayden Jane is apparently not entirely alone in this and someone is already working on it.  Check.

As for her IGF-1 level which is used to help determine her dose of gh, it is a bit high.  Likely, the eosinophil are causing inflammation which is in turn raising the IGF 1 values.  Grrrrr.  Hope the nice GI doctor gets this one figured out quickly!

So, 1 1/2 years after the infection that took over Ayden Jane began things look pretty good.  The gut issues may have been brought on by it all (or all the antibiotics) or maybe they are just one of the lovely PWS features we get to enjoy.  (note the rolling eyes)  Either way it is hard for me to believe but she is good on the inside.  Dr. Miller's response to my annoying questions was, "really really, you are in a good place."  Dare I breathe?  Dare I think about something else? 

Yep.  On to vaccinations for Kindergarten and investigating eosinophilic gastritis.  On to praying for  Dr. Schiemann (the Hopkins doctor) and beginning to get my act together for the One Small Step walk in Spartanburg.  On to enjoying summer fun and doing our best with each day.

No comments:

Post a Comment