Temperature problems

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

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Temperature problems

Postby Lipper5 » Fri May 21, 2010 3:08 pm

Does anyones child have any overheating problems while playing outside? Sleeping? My son seems to have problems ever since decompression surgery two years ago. It seems to be getting worse. The other day he was outside for 10 minutes and was starting to feel sick (which has happened before) My ped recommended I take his temp and went right up to 101.7. He went inside and an hour later was still 99.7. I just do not understand. And summer is coming and I feel really bad for him.
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Re: Temperature problems

Postby memom » Sat May 22, 2010 3:36 pm

My daughter has the same problem on hot days. On many occassions she has problems regulating body temperature either way. Sometimes it happens after getting out of the tub and she is freezing cold. Or, her face and hands burn like they are on fire, then 15 minutes later her feet are frozen. It is soooo hard to watch all the symptoms unfold. Nothing is worse then watching a child in pain.

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 Lipper5 » Sat May 22, 2010 8:08 pm

Did they ever tell you why she is like that? I talk about it all the time but they really cant say why or how to help.
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Re: Temperature problems

Postby lttutrow » Sat May 22, 2010 9:12 pm

I know another Mom whose son has had exactly this issue. I will let her know that you are here so she can chime in with what they have done for a medical work up and things they are trying.
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Re: Temperature problems

Postby Lipper5 » Sat May 22, 2010 10:02 pm

That would be GREAT! Thank you. Anything would help. It is driving me crazy. And it only seems to be getting worse.
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Re: Temperature problems

Postby youngwife » Sat May 22, 2010 10:32 pm

Rachael has a lot of trouble with the heat. It makes everything worse. This has been before and after her decompression.
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Re: Temperature problems

Postby Lipper5 » Sat May 22, 2010 11:36 pm

Aiden was just shy of two when he had his first surgery. We noticed the change right away. He was so red and overheated when he would sleep. Now that he is getting older and moving around every summer seems to be worse. Whenever he gets hot it is so extreme. The other day he was out playing and it was about 80 out. He was out for 10-15 minutes and complained he did not feel good. He was beet red and was hot to touch. I had him sit for about 5-10 min and then decided to take his temp. My family Dr had asked this past week if I ever checked to see if he had a fever during this. Well sure enough 10 minutes of running (even after a 5-10 minute break) his temp was 101.7 He went inside to rest and still after an hour was 99.7. I cant imagine what it would have been if he was out playing for a long period of time. Every time we have had a warm day this year it seems he isnt lasting that long before he complains he doesnt feel good. I really want some answers. And maybe this is where I will get them. Thanks everyone. Cant wait to hear back from any and all of you.
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Re: Temperature problems

Postby Grindel2 » Sun May 23, 2010 5:57 am

Lori asked me to come post. I don't have answers, only theories and partial answers. I would love answers from anyone! Sorry this is long.

We first noticed my son's overheating in January of 2008. He turned bright red on a car ride. After 45 minutes in a cool restaurant his face was still bright red and very hot. We had to use wet paper towels to cool him. In the fall of 2009 he had two episodes at / after school that involved dry heaving and severe heat emergency. (They weren't following the IEP & it was pretty scary) After his chiari surgery in January of 2009 we gradually noticed he lost about 10 - 15 degrees of heat tolerance. We believe it may be continuing to get worse. He currently will overheat even in the low 70's.

My son's issues are more than just overheating. When he gets to warm he goes into almost a panic / fight or flight type period. When he has been overheated it becomes more and more easy to overheat him again. Once he was too warm and we put him in the tub to cool him. His face and body were bright red. After 30 minutes in the tub, you could see a line across his chest (the water line). He had goose bumps below it and was bright red above it. He frequently goes pale when he gets too warm instead of turning red. He doesn't self cool. Sometimes he can have various hot and cool patches all over his body. My son also has trouble warming his body. He overheats in stressful conditions (much of life is stressful to him) and in loud environments. My son pretty much only sweats at the hairline. He can be over heated with no outward sign. He just gets crabby. A bath often fixes the issue. Whenever he gets a fever or is ill his temp goes to 104.8 without fail. When he first overheats his core temp often drops to 92 degrees. It will later shoot up. Often his temp will yo-yo over at least a 10 degree delta. He feels very ill if he gets even slightly warm.

Currently I feel like we are practicing medicine pretty much on our own with a little help from our pediatrician. It has been a long 7 year journey toward diagnosis and treatment. Realize chiari is not my child's only diagnosis. He also has been given diagnoses of PDD-NOS, CP (2 types), ataxia, etc. This is the condensed version from the last two years. Here are the steps we have taken for overheating:

First as part of the genetic testing we did our pediatrician sent blood work to Baylor University to rule out Fabry's.

They ordered blood work and checked his thyroid. We saw a reputable pediatric endocrinologist to rule out endocrine issues that can cause overheating. They said it was definitely not an endocrine issue.

The first neurosurgeon we saw told us to look up dysautonomia (dynakids.org is a great website). Our third neurologist, second, neurosurgeon, physiatrist, third pediatrician, etc. all agreed.

No one had good answers for us. My son also has trouble standing for more than a few minutes, has frequent leg pain, and still at almost 8 is not toilet trained (although chiari decompression and biofeedback have helped.) He has episodes where he is very pale if he stands still too long. Despite this he doesn't really fit the description of any particular type of dysautonomia. (Yes, several surgeons and several neurologists have ruled out a syrinx or TC)

We recently went to Mayo clinic to have him evaluated by their neurological autonomic dysfunction department. We thought that would be better than seeing a cardiologist who treats dysautonomia because we didn't think my son had any cardiac involvement in his autonomic issues. Our pediatrician didn't feel the cardiologists could help us either. My son did tilt table testing, blood and urine testing, pulmonary function testing, etc. We then saw a neurologist. He looked at the autonomic test results they had done and told me I was mistaken. My child was not overheating, he was having migraines. He believed the color changes, vomiting at school, etc. were all migraines and the school and I did not know what to look for. He told me what I was describing in my son sounded impossible and he could not believe it, I must be wrong. Keeping my son cool, dealing with his IEP & the school, trying to let him do some normal kid activities in our climate, is a nightmarish task. I doubted myself, second guessed everything, and was really depressed the neurologist had blown me off so completely. The neurologist ordered one last test (I think to prove me wrong). It was a sweat test. It turns out my son doesn't sweat over more than a third of his body (his core - stomach, chest, back, etc.). He has splotches on his legs, feet, and arms that do not sweat. It is like patchwork. He doesn't sweat enough to cool himself. The next morning when I met to wrap up the week with the diagnostician - I heard, the neurologist was astounded at how acurately I described my son's issues. They also said they had never seen a parents advocate so effectively for their child in the school system. They had few suggestions for us. We were told we were doing an excellent job. We were also told he was very unique and we were writing our own medical book. (Trying a beta blocker for migraine prevention was about it for ideas.) An observant friend of mine noticed his sweat patterns followed dermatone (spine nerve) lines. Mayo didn't comment on that.

We are currently searching for a new localish neurologist.

What we do for overheating:
Avoid any temp above 80 degrees. Sometimes in the summer he doesn't leave the house (105+ is common here)
Prescription to keep his classroom below 72 degrees
We keep our house around 70 degrees year round.
We have a handicapped placard - We pick him up from school curbside with the car running so he doesn't overheat on the way to the car. This keeps the car cool as well.
We have an extensive health plan for school. Specifies indoor recess above 76 degrees, how to cool him, etc.
We (and the school) mists him with water (face, arms, stomach, back, & neck) frequently especially when he is active or when it is in the 70's. We spray before he is too warm
We have many types of misters including a battery powered one the will cool a whole soccer team and pumps out a gallon of water every 15 minutes
We just ordered a cooling vest. Hopefully it will help.
We supervise every activity. One of us is standing by the dugout to spray him at baseball, etc.
We use a heat gun to check the surface temp of the ground. We try to keep him off anything that registers over 80 degrees. On an even slightly warm day (high 70's) the pavement can be 115 degrees or more.
We pay close attention to shade and how much sun is hitting my son. We have to be very careful.
He wears shorts under his pants at all times at school. That way they can remove is long pants immediately if the temp is over 60 to 65. My son hasn't worn a long sleeve shirt in two years.

We have found more humidity = more overheating. We also know damage to the brainstem can cause autonomic issues.

I have been told children with mitochondrial disorders also overheat easily.

We feel damage to his brainstem is the most likely cause of my son's issues. The neurosurgeon who did his surgery told us to think carefully if a diagnosis was worth it to us. He feels it will take finding the right doctors in the right states with lots of traveling. He feels my son's issues are very unusual and rare. He thinks we may be looking for more than one additional diagnosis. His closest guess was something similar to a syndrome that affects older men.

Good luck, sorry this is so long. I wish I knew more.
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Re: Temperature problems

Postby Lipper5 » Sun May 23, 2010 7:33 am

This was really good info. I thought I was crazy. I even posted about this about a year or longer ago. Nobody really replied about it. His is not that severe (yet). But car rides when it is hot does set him off. And when it is around 70 and higher he starts the sick feeling. He LOVES the outdoors and one day at the park he asked to go home because he did not feel good. And that park was shaded. We shall see what summer brings. But the weird thing that you mentioned was spine lines ( I think that is what you called it). Well, he just recently had a shunt placed for his syrinx and we noticed now when he overheats he gets this red round patch just to the side of the shunt area. Very weird and I did mention it to the neurosurgeon but they didnt know what that could be. I did give them a call again and I am waiting to hear from them. Thank you again!
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Re: Temperature problems

Postby Grindel2 » Sun May 23, 2010 9:47 pm

One of the key things is to figure out if your child sweats and how much.

I forgot to mention some medications impair the body's ability to sweat. In a child who already has trouble self cooling, they can make things much worse. Topomax is one and Benedryl is another. There are many more drugs that also cause this issue. Something to consider.

I would love to hear if you learn anything new!

Lara
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Re: Temperature problems

Postby Catherine » Mon May 24, 2010 6:09 pm

This is a very interesting post to me. My 4 yr old was decompressed Feb. 23 and was very cold after words for a long time. She is actually doing better now, she was using 5 blankets to sleep when it was hot out and now is only using 1. What is interesting is that my 6 yr old son has had problems regulating his temperature since birth along with sweating a lot on his feet and around his hair line and no where else. He also has had a couple seizures, intense eye pain, and feeling nauseaus and faint. Last summer we tried soccer and his coach pulled him from every game because he would become very pale, start acting goofy(like he was about to pass out) and just look like he was overheating. He also went 3 days with a temperature of 95.1. He's usually in the low range but occaisonally will go to 105. I never thought to take his temperature while he was playing a sport. He has had an MRI and CT scan for the eye pain, after he had seen an opthomologist several times and an ENT. He then had an EEG to check for seizure disorder. I have Neuro Cardiogenic Syncope, an autonomic disorder, so now he is seeing a Cardiologist. He has had 2 EKG's which have been normal. The Cariologist dosn't think anything is wrong with him but has agreed to see him again in 6 months to check him again. He has also had all the blood tests done. Everything comes back normal and I just haven't know what to do for him except keep him out of sports. This is the first time I've seen any information on temperature regulation.

I'm wondering if I should have another MRI done on him. His MRI was done at the same hospital that did my daughters. The cardiologist did not report the CM on my daughters report. I only found out about it because of the Anisthesiologist, and had to have another radiologist look at it. I'm wondering if they missed something in my son's, or if he just has an autonomic disorder also.

Thanks for bringing up this subject.

Crystal
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Re: Temperature problems

Postby Grindel2 » Tue May 25, 2010 3:48 am

According to Mayo the partial pattern my son displays is really unusual. You could always see if misting him with water when he plays sports helps. I also just ordered a cooling vest. My son does the same thing - he often skips turning red and goes pale. Sometimes when I spray him with water he will then turn red. I recently read something like 90% of the body heat is produced by the torso. That is where my son doesn't sweat. These kids can get into heat trouble fast!

Lara
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Re: Temperature problems

Postby Catherine » Tue May 25, 2010 9:33 pm

Lara,

I'm going to try misting him with water and see if that helps. I was just looking at the cooling vests, we'll have to save up for one of those. I'll have to push the sweating issue with his doctor again and see if she'll refer us for testing. I brought it up before but she just ignored me. Thanks for the information.

Crystal
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Re: Temperature problems

Postby Grindel2 » Wed May 26, 2010 2:03 am

We find we need to mist him on his face, neck, back of the neck, stomach, and back. For my son those are the places he doesn't sweat. We found some small mist bottles from discount school supply (online store) for about 89 cents that work well on cooler days. Misty mate has some great spray bottles that you can pump and then flip a switch to mist. They are pricey at around $30 to $40 but have worked well for us. We have insurance approval to pay for the vest and a doctor's prescription. Unfortunately none of the in-network places can order the vest. We have to jump through a bunch of hoops to get insurance to maybe pay. We have waited a year to order the vest because of the price.

The other thing to consider is that some areas have medical waivers you can get for your electricity. PG&E is our power company. We downloaded a form someone mentioned by chance. We had to have our pediatrician sign it. The medical waiver allows us to get a significant amount of extra electricity at the baseline rate. We also have solar panels so that helps too. I think we save $200+ a month during the warmer summer months on our electricity.

Lara
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Re: Temperature problems

Postby Lipper5 » Thu Jun 03, 2010 8:24 am

So we went to see an Endocrine Dr yesterday. He is ordering some lab work but feels it is more of a nerve damage thing. Possibly from the syrinx and brain surgery for decompression. He wants us to see a Neurologist. I did speak with a Neurologist and she feels he has a central autonomic dysfunction. She thinks we need to seek out help from a Neurologist that specializes in that. She does not. Does anyone know of any in PA? Ever heard of it? She said if that is what it is we cant fix it we can only deal with it. Somewhere along the lines as everyone described above. We are still looking at "maybe" it is a pituitary problem hormone problem but they really dont think that will come back as the case. I will keep my fingers crossed. Because from the documents above it seems as though it only gets worse not better. Thanks for any and all input!


Krista
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