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#26485 - 06/16/10 05:20 PM Re: Overheating? [Re: Promiseland]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
I have severe issues with heat. The only parts of my body that actually sweat are my face, palms and feet. My face turns a beet red if I'm in the heat too much. I live in the central valley in California and temps get above 100 degrees here. Often times even 90 degrees is to dangerous for me.
_________________________
26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26487 - 06/16/10 06:56 PM Re: Overheating? [Re: Promiseland]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Promiseland, what you're talking about is within the normal range of heat mechanisms. Heat exhaustion and heat intolerance are abnormal. Basically, it is a situation where the body gets to the point where the regular mechanisms to lose heat start creating more of a problem, which feeds on itself until you die. It's what we call a positive feedback loop.

I would certainly hope that you have never come close to heat stroke. My oldest son at age 2 went from feeding the ducks to unresponsive in under 20 minutes one hot day a few years ago. It's a really scary thing to contend with.


Edited by Hearsay (06/17/10 01:17 AM)
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#26491 - 06/17/10 01:24 AM Re: Overheating? [Re: Hearsay]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
I had a bout of heat stroke as a child. I am sure it was related to heat and dehydration.

However, it was not related to ich, in my case. It was the same process in which anyone would be under the risk of getting heat stroke from heat and dehydration.

I try to drink a lot of water now. Got to watch the beer consumption carefully.

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#26507 - 06/19/10 02:45 PM Re: Overheating? [Re: Promiseland]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
Thank you for all the helpful information! I do have one other question regarding the fluids. Kenny hates do drink water. He literally spits it out. I usually have to mix it with juice of some kind but I hate for him to have so much sugar all day. He just turned one in may, is it ok for him to have gatorade or other hydrating drinks like that? Of course I always continue to try and give him water but he usually refuses to drink it:(
Thank you again for your help:)
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My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#26508 - 06/19/10 10:23 PM Re: Overheating? [Re: cschaap]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Yes give him whatever he will take! smile You obviously want him to have water, you want to limit the sugar, but at the same time you HAVE to keep him hydrated so I would say Gatorade, Juice, whatever so long as you cut it as much as he will let you with water. I don't give Kallie straight juice, I always really water it down and she doesn't know the difference! smile
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Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#26509 - 06/20/10 02:30 AM Re: Overheating? [Re: MomofPrincesses]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
Thanks Kati! That really helps put my mind at ease:)
_________________________
My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#26510 - 06/20/10 03:49 AM Re: Overheating? [Re: cschaap]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
I completely agree with Kati! Brandyn won't drink juice only water but perhaps try 25% juice 75% water or even 50-50. One thing Brandyn's dietician told me was that yogurt is considered a fluid too so perhaps give that a go if he likes it?? I find that Brandyn sort of knows what he needs, even at such a young age! He knows where the faucet and fridge are and screams at both when he needs something lol smile I'm not sure about Gatorade but I would think it would be ok but maybe ask your pediatrician.
I freaked out the first time Brandyn overheated but you will learn to recognize Kenny's symptoms. Brandyn overheated today at the playground and as soon as I noticed it was happening, I had cold water and got the A/C running and we were home having a cool ( not cold) bath within minutes. I know it's stressful but once you're used to it ( hate to say it that way but ykwim) it's easier to manage smile
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My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#26511 - 06/20/10 04:53 AM Re: Overheating? [Re: brandynsmum]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
for kids under two, try pedialyte. It's basically the same as gatorade or power ade just in a kid friendly low sugar way. Try make ice pops out of it or I think they have them as ice pops.
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26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26512 - 06/20/10 04:38 PM Re: Overheating? [Re: Adrienne1]
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
yea we used the pedialyte and the gerber version of the same thing when Alex was under 2. It helped a lot, and I felt better knowing I was giving him something designed for kids, rather than an adult drink. And yes they do now make them in an ice pop form.
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Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#26513 - 06/20/10 04:49 PM Re: Overheating? [Re: jrmiss86]
Sideshow_bob Offline


Member

Registered: 02/11/09
Posts: 61
Loc: US, Midwest
Jennifer (Hearsay), thanks for the explanation on overheating/sweating. I've always wondered what exactly was going on. I am curious if you can solve the mystery of what happens with our daughter when she overheats -- she gets bright red, then a few hours later her torso and back break into raised red bumps/small blisters that are extremely painful. Is that miliaria, i.e. sweat that has been trapped by the extra skin? She doesn't experience the prickly feeling that goes with heat rash, just pain. Sometimes when she overheats her arms and legs look like she is burned, even if the skin has been covered by clothing (not sunburned). Whenever she overheats she goes through a major skin peel after the blisters subside, usually two days later. Any thoughts?
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6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

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