Temperature problems

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Re: Temperature problems

Postby memom » Sat Jun 05, 2010 6:30 pm

I just had a conversation with a friend of mine who is a fireman/emt and safety instructor. I asked him about the best way to cool your body when overheated. He told me that the fire department is now telling firemen the fastest way to cool your body is to submerge both arms from the elbows down in icy water. They now carry large "tubs" that they fill with water and ice to cool off. He said it is amazing how fast this will lower your body temperature.

I really like this because it is inexpensive and can be applied fast in most any sitation.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Temperature problems

Postby Grindel2 » Sun Jun 06, 2010 2:48 am

We went the same route. We went to an endocrinologist who definitively ruled out endocrine issues.

I was only able to find two clinics with neurologists specializing in autonomic dysfunction. One is Mayo clinic in MN and the other is Froedtert (spelling?) medical school in Wisconsin. We tried calling both places as did my pediatrician. We were never able to get a response from Wisconsin, so we went to Mayo. Vanderbilt University also has neurologist that study autonomic dysfunction. I am not sure they see children and they seemed more research oriented.

Mayo was amazing and very child centered. However, the neurologist we saw was convenced that I was mistaken in my observations and my child was simply having migraines. I believe the exact quote was, "I cannot believe what you are saying is plausable. You must be mistaken." He went onto explain all of what I was describing could be explained by migaines. He had a bit of an attitude. My son had passed all of Mayo's initial autonomic screening and they found nothing. I knew going in that he was unlikely to have cardiac involvement in his autonomic dysfunction. The neurologist also knew / knew of my local neurologist. He saw migraines written in the report and was convenced. The neurologist ordered one final sweat test which found my son doesn't sweat over most of his body including the core. The next day the diagnostician told me the neurologist was astounded at how accurately I described my child's issues and that we were amazing advocates. That doesn't really help me much though. We might have gotten further if he had believed and listened to what I was saying. The report we received is full of contradictions and inacuracies in the history. There are dozens of errors. It was very disappointing. We did receive some good data, but not what we hoped. Knowing where he doesn't sweat was helpful. I knew my son did not have a typical case of autonomic dysfunction. Unfortunately it seems the doctors we saw didn't know what do do about an unusual presentation. They had no idea why his body does some of the odd things it does. We were told that we were writing our own book. Good luck. I would go again, but hope for a neurologist who listened better.

Unfortunately I think in many ways autonomic issues are less well understood than chiari.

There are many cardiologists who treat autonomic dysfunction. I don't know if they would be helpful or not. Dr. Barry Grubb in Toleto has written much of the literature on one type called POTTS. We didn't start there because I didn't think my son had cardiac involvement.

When we consulted Dr. Frim when we were still being told my son was asymptomatic for chiari locally, Dr. Frim told me to look up dysautonomia. He mentioned he has some patents go to Cleveland for treatment. He doesn't recommend it anymore he said because their quality of life wasn't really improved. My local neurosurgeon and neurologist knew of no other places to go for treatment. My local neurosurgeon told me to decide how much a diagnosis was worth to me. He thought there would be huge financial and emotional costs to try to get one, because what my son has was very rare and very unusual. In fact he wasn't convenced there was only one more diagnosis.

The DYNA kids website http://www.dynakids.org/what.jsp can send you a list of doctors who treat autonomic dysfunction. There is also this website http://www.potsplace.com/ with a physicians list. There is also one here: http://www.ndrf.org/ The trouble is finding someone to see children. You also would have to try to figure out who was worth seeing. It is hard to tell from a list.

As I sit trapped in my house all summer with my child who just wants to be outside playing, I would love to hear about it if you find someone knowledgable. I am sure my soon would make an interesting paper.

Good luck in your search for answers!

Lara
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Re: Temperature problems

Postby Grindel2 » Sun Jun 06, 2010 2:59 am

memom wrote:I just had a conversation with a friend of mine who is a fireman/emt and safety instructor. I asked him about the best way to cool your body when overheated. He told me that the fire department is now telling firemen the fastest way to cool your body is to submerge both arms from the elbows down in icy water....

Lauri


I love this idea, but it oddly doesn't work for my child. He only cools where he is submerged. We have pulled him out of the tub after 30 minutes of submersion after overheating. We have been able to see the waterline on his chest. He will have goosebumps below the waterline and be bright red above it. We are even having trouble with the cooling vest. I have to experiment, but his face gets really scarlet and is burning to the touch when he wears the cooling vest. It is really odd. It would be intersting I think to try this method while monitoring his temp and see if it eventually helped.

Thanks for sharing the idea.
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Re: Temperature problems

Postby Lipper5 » Fri Jun 18, 2010 5:59 pm

We have an appointment in Cleveland Oh Aug 17 to do some autonomic testing. I hope they can say this is what it is or not. I know it sounds as though it is a permanent thing. But at least I know what it is and how to deal with it. FINALLY!

Krista
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