Sometimes I wish that there was someone or some way we could see inside Ayden Jane, all the way down to the cellular level, and figure out what makes her function so well. I know it sounds strange and a bit like wanting to do a science experiment on your own kiddo, but I really wish I knew what is working so well in her that sort of over rides the PWS.
Basically, when she has the right diet, stays healthy and has the necessary dietary supplements she presents as a typical Kindergartener. When she gets ill (especially with a bacterial infection) pieces of PWS pop up. Things like food interest/seeking. When we let the b-12 wash out her preschool teachers were really worried about her and it was so bad they had to remove her from the classroom. When she ate a heavy carb load it was ugly. Her behavior was awful, her speech was awful, she became lethargic and fell asleep waking up with a nasty headache...
I know most kids with PWS don't respond so dramatically to little changes in supplements or diet or even illness. It is like I can watch her go from a kid with PWS to a typical kiddo by changing what goes in her.
This was all brought to mind this past weekend when Ayden Jane picked up a little virus. Her body still responds to viral infection without too much trouble but her speech was slow, her right eye (strabismus) started to turn in again and she slept a ton. She is feeling much better and has returned to her typical self.
The flipside in this is the ever present feeling that although she is doing so great, it could all fall apart at any moment. Such a precarious balance and the only way to keep it going is a bit of trial and error. Yep, takes me back to wanting to be able to see inside those cells!
Basically, when she has the right diet, stays healthy and has the necessary dietary supplements she presents as a typical Kindergartener. When she gets ill (especially with a bacterial infection) pieces of PWS pop up. Things like food interest/seeking. When we let the b-12 wash out her preschool teachers were really worried about her and it was so bad they had to remove her from the classroom. When she ate a heavy carb load it was ugly. Her behavior was awful, her speech was awful, she became lethargic and fell asleep waking up with a nasty headache...
I know most kids with PWS don't respond so dramatically to little changes in supplements or diet or even illness. It is like I can watch her go from a kid with PWS to a typical kiddo by changing what goes in her.
This was all brought to mind this past weekend when Ayden Jane picked up a little virus. Her body still responds to viral infection without too much trouble but her speech was slow, her right eye (strabismus) started to turn in again and she slept a ton. She is feeling much better and has returned to her typical self.
The flipside in this is the ever present feeling that although she is doing so great, it could all fall apart at any moment. Such a precarious balance and the only way to keep it going is a bit of trial and error. Yep, takes me back to wanting to be able to see inside those cells!
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