temperature regulation problems?

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temperature regulation problems?

Postby pearland1 » Mon Aug 27, 2007 4:10 pm

Does anyone notice that their child seems to have temperature regulation problems?

I'm just curious, since my 3-year-old daughter (CM1, OTC, ?Cranial settling, ?EDS) gets very sweaty, when it is not even that hot, then the next minute after she drinks something cold, she will get cold to the point of shivering, and turning purplish.
It just seems she is to the extreme of what everyone around her may be feeling.
Does this sound familiar to anyone, or is it just me?

Thank you for your communication!
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Postby lovemyblessings » Tue Aug 28, 2007 1:40 am

My Keegan is the exact same! He has ACM1, PTC, and sleep apnea (which was hopefully corrected with the removal of his tonsils and adenoids).
~Dawn~
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John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Postby pearland1 » Tue Aug 28, 2007 8:36 am

Can you remind me what PTC is?
Thank you for your feedback!
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Postby lovemyblessings » Tue Aug 28, 2007 8:45 am

PTC=pseudotumor cerebri or intracranial hypertension. It's an elevated pressure inside the brain NOT caused by obstruction.
~Dawn~
Blessed Mommy to six amazing blessings here with us
John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Postby Gracie Rose » Wed Aug 29, 2007 1:24 am

Hi,

I had that before my decompression and my 9 yr old does it all the time. We've had a 80 degree day and he's in sweats and a turtleneck !! I was told it was autonomic dysfunction due to EDS and brain compression.
Also, tachycardia/bradycardia seems to go with it in our family, and BP problems.

Lisa
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Postby crism » Fri Sep 14, 2007 7:45 am

My daughter does it also (CM1). She is 6 and had her decompression in Feb. She has problems regulating her temp.

The Drs tell me it does not have to do with the CM.
Last edited by crism on Mon Oct 15, 2007 3:02 pm, edited 1 time in total.
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Postby Mayzoo » Thu Oct 04, 2007 11:03 pm

certain medication can affect the bodies ability to self regulate---is your kiddo on any meds? Specifically neuropathic pain meds it topamax, neurontin (gabapentin), keppra, lyrica, etc................list goes on and on. Other meds can affect body temperature metabolism as well---or it could just be the Chiari.

I will try to check back her in a few days. My daughter is on topamax and we really have to watch for dehydration, over heat exhaustion, and temperature variances (she seems to sweat fine, but still can get too hot too fast).

Mayzoo
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Postby lovemyblessings » Thu Oct 04, 2007 11:06 pm

Keegan isn't on any meds on a regular basis.
~Dawn~
Blessed Mommy to six amazing blessings here with us
John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Postby pearland1 » Fri Oct 05, 2007 4:19 pm

No...my daughter is not on any medication either.
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temperature regulation

Postby hmlaz1 » Sat Oct 06, 2007 9:54 pm

My 14 yo daughter has recently been reporting feeling very hot or very cold, although she always feels cool to the touch. Her regular measurable temp is always @97.4F. She has idiopathic sm and possibly conective tissue disorder.
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Postby LIZARD110366 » Fri Dec 21, 2007 10:56 pm

I know this is an older thread, but it caught my eye tonight. My 13 yo son, dx'ed 8 years ago this month, has severe body temp regulation issues. He is never cold and can't tolerate even mild heat. He also never seems thirsty and won't sweat. Because of his autism, we have not been taken seriously by the opinions we received, as he doesn't appear to exhibit "classic" Chiari signs. (Yep; been to TCI, too.) I am also completely convinced it's interfering with his expressive language.

Can anyone relate to this at all? I feel like the lone wolf! HELP...:(


LIZARD :(
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Postby hmlaz1 » Sat Dec 22, 2007 1:12 pm

In response to LIZARD. My 14yo has had a confirmed dx of Ehlers-Danlos Syndrome, a genetic connective tissue disorder, since my last post. The pediatric rheumatologist explained to me that people with EDS frequently have dysfunctional autonomic nervous systems, which would explain her temperature issues and extreme color changes that we frequently see in her skin. You don't say what your son has been dx'ed with other then autism. In my professional life, I am a pediatric SLP and have worked with many kids with autism. I find they frequently have unusual symptoms that no one is able to contribute to a specific cause. Given that what we know about autism is that it is a neurobiological disorder, it would not be out of line to assume your son's autonomic nervous system is affected also. Unfortunately, there is no standard treatment that I have been told about for these types of issues, other then treating symptoms as they occur. The best treatment I have found for my daughter is distraction, but, it has mixed results depending on her pain levels.

Be well and happy holidays.
heidi
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Postby Janice » Sat Dec 22, 2007 2:42 pm

Heidi,

What is SLP?

Thanks and Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

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