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Author Topic:   Son often gets overheated
jrmiss86
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Posts: 316
From:Marlton, NJ, USA
Registered: Jun 2005

posted July 20, 2005 06:18 PM     Click Here to See the Profile for jrmiss86   Click Here to Email jrmiss86     Edit/Delete Message   Reply w/Quote
My 6 month old son gets overheated very easily and will often run a low grade fever for hours afterward. I was wondering if this has happened to anybody else. he is so little and can not tell me how he is feeling so I tend to worry when he as a fever even a low grade one. the doctor tells me that he is just teething but I have my doubts, especially since this happens on a daily basis since the weather has heated up. It didn't happen in the cold weather but he was a lot younger than too.

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Hearsay
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Posts: 801
From:Chicago, IL, USA
Registered: Jan 2004

posted July 20, 2005 06:34 PM     Click Here to See the Profile for Hearsay   Click Here to Email Hearsay     Edit/Delete Message   Reply w/Quote
Ichthyosis babies are very prone to overheating. Because the skin is brittle, broken or growing too fast, or there's something wrong with the molecule that makes skin waxy, they lose 4-7x as much water as those of us with normal skin do. Water carries away heat. Body temperature drops. So in order to maintain body temperature, they accelerate their metabolism. The cycle repeats. If they dry out too much, they can develop heat exhaustion or heat stroke.

Cool towels and water in a baby bottle available all day should help. If you have fans or air conditioning, keep it running, and you may want to consider light-filtering shades on the sunny side of the house. Depending on what kind of ichthyosis your son has, he may eventually need a cooling vest. I know Shauna's daughter Ryley has one - it is basically a vest with pockets that you stick ice packs in.

Also, depending on what kind of ichthyosis you have, the built up skin may be insulating his little body. Lamellar tends to flake off, but EHK tends to keep getting thicker. Are you bathing him daily? How are you doing it?

Jennifer
Nathan - 2.5 (ichthyosis-en-confetti)
his dad is also affected.

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ShaunaJ
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Posts: 233
From:Ogden,Utah
Registered: Jul 2003

posted July 20, 2005 06:41 PM     Click Here to See the Profile for ShaunaJ   Click Here to Email ShaunaJ     Edit/Delete Message   Reply w/Quote
My 7 year has LI and she has always had a problem with over heating since she was born. We use misty mate misters to help cool her down, cooling vest, and tons of other stuff. We knew Ryley was to hot when her face would get red, then we would do our usual with cooling her down. When she had fevers we just gave her Motrin or advil (childrens of course) and put her in a cool bath not cold but just warm or we would put a wet rag on her head. This is a bigger problem during the summer then winter for us also as it is with most with Ich. Winter brings on a whole different set of problems for us. It is nicer when they get older and can tell you when they are to hot.

Shauna Johnson

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jrmiss86
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Posts: 316
From:Marlton, NJ, USA
Registered: Jun 2005

posted July 20, 2005 09:21 PM     Click Here to See the Profile for jrmiss86   Click Here to Email jrmiss86     Edit/Delete Message   Reply w/Quote
Alex( my son) has x-linked ichthyosis. So far the biggest problem we have had is the scales on his scalp, which we have been managing pretty well. Most of the time infant tylenol brings down the fever, or we give him cold water or cold juice in his cup or a bottle, but he is not a fan of cold drinks, although he will take a ice cube now and then. The times that I get the most worried is when I have to put him in the car. We do not have a garage so the car is outside and it gets very hot, and since it is a small car there are no AC vents in the back and with his seat facing the back he gets very little air to help cool him off. I will try the spray bottle tomorrow in the car.

He gets a bath every night right before bed. He has loved taking a bath since the day he came home, when he was an infant it was the only thing that would calm him down when he was cranky.

Thanks
Heather

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Hearsay
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Posts: 801
From:Chicago, IL, USA
Registered: Jan 2004

posted July 20, 2005 09:54 PM     Click Here to See the Profile for Hearsay   Click Here to Email Hearsay     Edit/Delete Message   Reply w/Quote
Do a search for threerxli's posts. She has 3 boys with the disorder and is always full of good advice. I know there are other families here with the same, but that is the name that jumps to mind right now.

If you're still using an infant carrier, go down, start the car and open the windows, go back up and get him and don't put him in until the very last minute. Keep him in the shade until you are ready.

That is one problem I had with my son - especially now that I have 2 kids. They often fall asleep in the car. If I get him out first, my daughter howls, and if I get her out first, my son overheats very quickly, even with the doors or windows open. I always wipe him down with a cool washcloth, which helps, and I put him down for a nap with a sippy cup of ice water.

It gets easier as they get older. Hang in there.

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ShaunaJ
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Posts: 233
From:Ogden,Utah
Registered: Jul 2003

posted July 21, 2005 02:29 AM     Click Here to See the Profile for ShaunaJ   Click Here to Email ShaunaJ     Edit/Delete Message   Reply w/Quote
We had the same problem also, so we had to get a mini van with rear air. It has made a big difference. If you can't do that then I would get an automatic start for the car and let the air run for a bit before putting the baby in they are not to spendy. The spray bottle is a good idea, also keep liquids in him. Like Hearsay said it does get better.


Shauna

[This message has been edited by ShaunaJ (edited July 21, 2005).]

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Veronique
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Posts: 24
From:Rheden, the netherlands
Registered: Jul 2003

posted July 21, 2005 03:38 PM     Click Here to See the Profile for Veronique     Edit/Delete Message   Reply w/Quote
Karlijn has EHK, and we had a warm summer after she was born (to our standards that is). We used wet towels and put them over her legs to help her cool down.
She still gets hot in the car (she's 3 years of age now), but we don't need the towels anymore.

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jrmiss86
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Posts: 316
From:Marlton, NJ, USA
Registered: Jun 2005

posted July 25, 2005 06:08 PM     Click Here to See the Profile for jrmiss86   Click Here to Email jrmiss86     Edit/Delete Message   Reply w/Quote
Thanks to everyone for all your suggestions. I have been giving my son a sippy cup with water in it when we get into the car. It took a couple of days for him to get used to water, he is not a big fan, but now he loves being able to drink out of his sippy cup in the car. It seems to keep him hydrated and he hasn't had a fever in two days, which is a huge accomplishment for us

Thanks Again

Heather and Alex.

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charmed7
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Posts: 126
From:Hartford, CT
Registered: Mar 2004

posted August 21, 2005 01:44 PM     Click Here to See the Profile for charmed7     Edit/Delete Message   Reply w/Quote
My son has x-link too. He's 6 now, but I remember the over-heating problem when he was a new born. We lived in CT for his first year. I didn't have air conditioning in the car. I would bring a wet towel to place over him and just keep refreshing it whenever I could. Ice water in the cup/bottle seemed to help to. As far as being home (also without central air) we would let him put his feet in the cold water at the sink and play for a bit. And that seemed to cool him off. The biggest help was giving him up to 3 baths a day. It was like running circles though because he would be hot, get a cool bath, get out and put aquaphor on which would make him hot again, so it was back in the bath. There are also pedialyte ice pops he would love!!! You should try that for a treat. It cools him off and gives him hydration at the same time.

Good luck. I have lots of memories of those early years and had no one to tell me what was happening or could happen. It felt like every year was something new with him. And it's still happening at age 6!

Sheila

[This message has been edited by charmed7 (edited October 07, 2005).]

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