We made the trip down to Gainesville to see Dr. Miller. Ayden Jane was great and did a fair amount of showing her stuff. The reason for the trip was not because we were having some sort of problem, just because we had yet to see any specialist who really knows Prader Willi Syndrome. I have been sort of treating her by way of all the things I have researched on my own and I am very aware of my lack of scientific training. After a while, you just need to know that what is going on inside is as great as the outside.
I have to say Dr. Miller is incredibly patient. We did not leave from our 11:30 appointment until 2:30! She had lots of opportunity just to observe Ayden Jane as well as to ask questions about her first 2 years.
So what did she observe? Ayden Jane ran up and down her hallways playing hide and seek. She is quite quick and I had trouble catching her a few times. Dr. Miller was playing with AJ and when she told her, "give me 5" AJ grinned at her, said "no" and pulled her hand back. As our conversation went on and AJ just could not entertain herself with toys anymore, she just used me as a jungle gym. She climbed up me to my shoulders to look out the window and asked to go upside down. Now, to those of you who are not familiar with kids with PWS, they are supposed to run out of energy not get a bad case of the wiggles when couped up too long.
So for me, a huge sigh of relief. It is like a weight lifted that someone who really knows has gone over my list of supplements and dosages and has given me a stamp of approval. I feel great that all she thought might be off was that I might be a tad low with her carnitine. She ran labs for lots of things including: IGF 1 levels, CoQ10, carnitine, vitamin D... I should hear in a few days.
As for details of what, how much, when I started... for all her supplements. I think I will get to that tomorrow.
Janet
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