Decompression surgery question

[LIZARD]

My 12 ½ yo son was dx’ed with ACM I at 5 ½, in December of ’99, almost exactly 3 years after his autism dx. I always thought his “penchant” for cold was strictly a sensory thing, but now that we’re into the bitter cold winter months and I insist that he wear his heavy coat outside, we’re in a serious power struggle. Yesterday, we had a high of only 15 degrees with a wind chill of about -20, yet he was honestly okay with just a light jacket and a sweatshirt underneath. In the summer, he gets beet-red from the heat and does not sweat at all. It scares me to death, and his teachers have said he doesn’t cope well in the final weeks of school. No wonder!

He was thoroughly assessed over 2 years ago at TCI and found not to require surgery “anytime soon,” but this was in late October when his issues with intense heat were not evident. Ever since he was very young, he has insisted on wearing a t-shirt to school, so I compromised with him by having him wear a sweatshirt over it. The schools here typically keep the heat jacked up to about 80F during the winter months, so I thought little of it, but I worry about frostbite and hypothermia from his refusal to dress for the bitter cold weather, in spite of the fact that he really seems comfortable.

Anyone have a take on this? I have hydrocephalus and have always had body temp “comfort zone” issues, which are worse now, with a significant weight loss (and more to go!). I am always freezing, and my “normal” body temp is a good degree below the accepted norm of 98.6. His, however, is normally about 98.6, give or take about .2. If he seems to have no other issues, other than the autism (which I’m sure is connected somehow), would any nsg ever consider surgery on him?


Thanks for any thoughts,

LIZARD :)

[roz1950]

sorry to hear this Liz , but wanted you to know of a new yahoo site due to Wacma:
As some of you may be aware -- there has been a change at wacma with some of the more experienced moderators and peers leaving wacma ( reasons left out here - since "we " don't bash ANYONE - but I can try to explain more fully in private mail ) ---

What I want to tell everyone here though is -- there is a new suport group formed on Yahoo=groups now -- where TCI physicians will be posting intermittantly -answering some Q's ect --announcing new findings -research / and the greater majority of the " well informed acm advocates "who WERE at wacma can now be found ect .... and where ALL who'd be intrested are welcome .

You can find /join the group by going to
groups.yahoo.com --- then enter the name
International Chiari Connection " ( will be known as ICC for abreviation sake ) -- it will bring up a page to register and join in.

I find both asap - and the info through the peer efforts that were at wacma - now at ICC - both very helpful in differant ways - I hope only to help others connect with those very knowledgable and experienced advocates at this new site in posting this info .