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#26447 - 06/12/10 03:33 AM Overheating?
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
I am always worried about Kenny overheating. Sometimes his face will be red and really warm but the rest of his body is ok. Other times his whole body is warm but he seems content and will continue to play. I am constantly spraying him with water and putting a fan on him in the car but I guess I am wondering when I should be legitimately concerned. What are some symptoms of overheating besides his face turning red? It's so hard to tell sometimes because his skin always seems a little warmer to the touch even in air conditioning.
Also, I was wondering if anyone has used Urealac Lotion and how often you use it?
One more question...we have burbur carpet throughout our house and Kenny just started crawling. Since he started I have noticed his knees and the top of his feet are splitting, not bleeding, but very red and raw looking. He has never had this before so I guess i am wondering if this is due to the friction from the carpet or if the scaling just got thicker and now it's cracking deeper. Should I put anything on the cracks? It looks painful to me but Kenny will just continue to play so it's hard to tell.
Thanks for your help:)
_________________________
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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#26451 - 06/14/10 01:31 PM Re: Overheating? [Re: cschaap]
scotsmum Offline
Member

Registered: 08/25/07
Posts: 88
Loc: scotland, uk
For overheating, make sure he drinks plenty fluids too, as well as spraying with water. My son (nbCIE) overheats easily in hot weather, esp when running around, i always make sure he drinks plenty, keep him in shade if poss, and playing with water is great either swim pool, paddling pool or even just a bucket of water and some toys. Also i tend to use 'cream' type emollient on his skin in warm weather in place of more oily ointments.
Not sure on any other actual 'symptoms' of overheating, my son just gets v red and hot 'looking', others may advise better.
For cracked skin, something like vaseline petroleum is very good. Hope this helps

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#26468 - 06/15/10 12:22 PM Re: Overheating? [Re: scotsmum]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
For Kallie I feel the bottoms of her feet, the inside of her legs, those are good indicators of how hot she is. I also took a thermometer with me to Mexico, I never felt like I needed to use it but my pediatrician said that it was a good indicator as well. Anything over 100.4 and you needed to start worrying. I also keep tons of lotion on her and have her drink lots of fluids!

As for his knees and feet, its probably the carpet causing the problems. Have you heard of Baby Legs? Check them out and you may want to order some of those. That will protect his knees and feet!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#26473 - 06/15/10 02:52 PM Re: Overheating? [Re: MomofPrincesses]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
My children first turn red, then get cranky and lethargic and uncooperative, and THEN they start to sweat. I don't usually let them get past cranky and lethargic. By the time they are sweating, they are severely dehydrated.

I go everywhere with bottles of gatorade or water in the car. I use the refillable ones with flip top straws on them. Even a walk across the street to the grocery store is done with beverages for all.
_________________________
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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#26475 - 06/15/10 06:06 PM Re: Overheating? [Re: Hearsay]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Brandyn's face goes very red and hot and his feet get hot. I keep him barefoot all the time when it's warm which helps a lot. As Jennifer said with her children, Brandyn also becomes extremely aggitated and cranky and screams for water. I don't think Brandyn can sweat at all? I have never seen him sweat at least.

We were at the zoo once and it was pretty warm so I actually kept putting water on him and soaking his clothes which helped a lot. People thought I was a bit nuts for drenching my child but it worked! wink

As far as his knees, Baby legs are great. After awhile we weren't really having issues anymore so it may be temporary, fingers crossed.

I am a bit worried about the conference to be honest. I don't have a cooling vest for him so I think we will just go to the park at night. Even then, I'm not sure how we will go..
_________________________
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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#26476 - 06/16/10 12:30 AM Re: Overheating? [Re: Hearsay]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Please explain how sweating indicates dehydration and severe dehydration in the case of your children? Normally, sweating would indicate that the body's cooling system is working properly.If someone could sweat and is fully hydrated, there should be no problem at all.

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#26477 - 06/16/10 01:37 AM Re: Overheating? [Re: Promiseland]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Promiseland, Jennifer will obviously be able to answer your question better than I can as she knows her children's particular type of ichthyosis much better than I do naturally but I read somewhere that people with ichthyosis and probably particularly kids due to their size require MUCH more water than someone unaffected. So when a person with ichthyosis overheats they become dehydrated and then if they do eventually start to sweat, they would lose even more fluids thus creating severe dehydration quickly??? I'm not sure really but that is how I interpreted what she said smile
_________________________
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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#26478 - 06/16/10 02:36 AM Re: Overheating? [Re: brandynsmum]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Morgan,

I understand that there are rare and severe types of ich that pretty much prevent sweating. This would be Lamellar and CIE. And in those situations, overheating should be avoided at all cost. Otherwise, heat stroke may follow.

However, for the milder and more prevalent kinds of ich, like X-linked and severe Vulgaris, there is also an "overheading" or "heat intolerance" problem. However, the solution in these situations does not entail avoiding hot weather at all cost. On the contrary, people afflicted with these types of ich fare best in the summer. The reason is that we have an underlying ability to sweat, and to sweat quite profusely. But this ability to sweat is hampered by scale buildup associated with cold weather. In essence, we need the summer weather in order to sweat which in turn clears the skin of scales. A bad prickly itch would occur when we live in cold weather, and the scales are bad, and we need to sweat but cannot in the absence of hot and humid weather that would facilitate sweating.

For me with severe vulgaris I love the summer because the weather allows me to sweat freely, which in turn would exfoliate the scales. Outside of summer weather, for me, sweating would be harder to come by, the build up of scale would be unimpeded as a result, and I would run the risk of bad prickly itch the next time I exert myself and need to sweat.

I have prickly itch overheating when I cannot sweat. I cool down when I can sweat. And I need summer weather in order to sweat.



Edited by Promiseland (06/16/10 03:18 AM)

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#26479 - 06/16/10 03:41 AM Re: Overheating? [Re: Promiseland]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
My children have ichthyosis en confetti. It is most similar to EHK. What happens with us is that the skin grows too fast and that the keratin molecule that makes skin waxy and waterproof is broken.

Broken skin barrier = increased rate of water loss. This isn't sweating, this is just heat of evaporation, the same way water boils down when you cook a hot dog on the stove. Most types of ichthyosis lose 4 - 7 times as much water as someone with normal skin, and are therefore in a constant state of dehydration. They drink a LOT and eat about a cheeseburger's worth of extra calories to compensate.

When you lose water, you also lose heat energy, and this has to be made up with diet. The majority of people with ichthyosis are average or underweight. There are very few on the obese end of the spectrum simply because so much energy is used between dehydration and excessive skin growth. For kids, that would be calories normally used for growing everything else.

Anyway, when my kids overheat, the regular heat control mechanisms kick in. (sorry if I sound like a physiology teacher; I am!)

1. Blood vessels open and bring blood to the skin surface, making them red.
2. Activity goes down so the muscles stop adding to the internal heat level.
3. heart rate goes up to get the blood circulating to the skin surface faster.
3. The sweating mechanism is intact (some types have blocked sweat glands, but the mechanism that CAUSES sweating works just fine - the prickly itch some types have is the sweat getting trapped in the blocked skin ducts). Sweat begins to develop.

This is all normal, except in ichthyosis, the skin is thicker than average, so it's like wearing an extra layer of clothes (except Netherton's, which is the opposite problem). And the body is already somewhat dehydrated from the broken skin barrier. So when they finally start to sweat, the water lost in sweating doesn't come from the reserves in blood plasma, it starts coming out of the body cells, by osmosis.

Osmosis - water tries to balance levels of water compared to sediment on both sides of a cell membrane. If water is leaving the blood by sweating, the percent of molecules of salt and potassium and iron and whatall goes up. So water leaves the cells to rebalance the ratio of stuff on the inside of the cells and what's in the blood vessels.

Here's where the danger begins. If you don't get out of the heat, this cycle starts to repeat. You keep sweating, water keeps leaving the cells, which means you have more to sweat, which makes you more dehydrated. At some point, all this water loss messes up your oxygen and CO2 levels on your blood cells, messes with your brain control mechanisms, and you enter into heat exhaustion. There are just no more ways to lose the heat, but the temperature keeps going up. Pretty much the only way to stop this is to get wet and cool as quickly as possible. Drinking fluids isn't enough if you get this far.

The last step, then, is heat stroke. The brain gets so hot from the fast heartrate, dehydrated blood, dehydrated cells, messed up oxygen levels, etc, that it suffers brain damage. Sometimes, you can even got into a coma or die from it.

Sweating isn't an indicator of dehydration. It's a normal function to control heat levels in the body. The problem in ichthyosis, at least my family's type, is that by the time they are sweating, they are severely dehydrated. The reason they don't usually sweat is because they are dehydrated to begin with and the body tries to use the other mechanisms for cooling before resorting to sweating.
_________________________
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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#26482 - 06/16/10 09:03 AM Re: Overheating? [Re: Hearsay]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
I am not familiar with the type of ich your children have. All I know of EHK is inclination for blisters, and overheating, others tell me on the board, would be less of a problem.

Cannot digest your biology explanation well regarding what is sweating and what is not. It is not familiar to my experience. But thanks for the information, especially if it pertains particularly to the type of ich in which the defective process of regeneration is associated with accelerated reproduction of the skin.

All I know from my experience is that I do not have this water loss problem that would lead to dehydration prior to sweating. Maybe this has to do with the type(s) of ich associated with slow shedding rather than accelerated reproduction.

All I know is that, with severe vulgaris, I have never felt overheating associated with heat stroke. Of course anyone can feel heat stroke if dehydrated enough. But I have never felt the discomfit, danger or risk of heat stroke related to ich. My discomfit has to do strictly with prickly itch. And prickly itch heat intolerance, in my experience, is strictly related to being able to sweat or not. Hence, the virtuous cycle related to summer weather, sweating, exfoliation, and more sweating, and the vicious cycle of cold weather / air conditioning / overconsumption of alcohol, inability to sweat, scale build up, and prickly itch.

And while prickly itch is not as threatening a problem as heat stroke, I still would not wish it on my worst enemy.

Thanks for all the information you have provided.


Edited by Promiseland (06/16/10 09:05 AM)

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