LIZARD
07-27-2007, 04:35 PM
HUbby and I had a talk last night about Drewy, and I said I am realizing now that his main issues are apparently related to the Chiari and may not actually be autism. At least if autism is a factor, it doesn't appear to be the main prob. His major problem areas are:
1) communication (he's at about a 6 yo level and was 13 on Monday)
2) sensory (eats just a handful of foods)
3) complete lack of sweating ability, which I have also heard is a Chiari manifestation
These are the things I most often hear from parents that improve when their kids have the surgery.
I won't lie. I'm a lifelong neuro patient myself, and the idea of my sweet son having brain surgery scares the H3LL out of me. I'm equally scared of what will happen to him if we don't talk it all out--the good, the bad, the ugly, and the downright terrifying. We might even decide not to, but I think we have to talk about it, even though TCI said he doesn't need it.
Words of wisdom from anyone?? Please pass 'em on!!
TIA!
LIZARD :)
1) communication (he's at about a 6 yo level and was 13 on Monday)
2) sensory (eats just a handful of foods)
3) complete lack of sweating ability, which I have also heard is a Chiari manifestation
These are the things I most often hear from parents that improve when their kids have the surgery.
I won't lie. I'm a lifelong neuro patient myself, and the idea of my sweet son having brain surgery scares the H3LL out of me. I'm equally scared of what will happen to him if we don't talk it all out--the good, the bad, the ugly, and the downright terrifying. We might even decide not to, but I think we have to talk about it, even though TCI said he doesn't need it.
Words of wisdom from anyone?? Please pass 'em on!!
TIA!
LIZARD :)