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#26518 - 06/21/10 01:40 AM Re: Overheating? [Re: Sideshow_bob]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Candace -- I agree about the ice pops too and the yogurt! They also make Gogurt, which can be frozen and eaten like freezer pops. I haven't bought them yet but need to remember to pick some up. Those can be great!! And pedialite is also a good choice, more expensive so we go with gatorade and water it down a lot! 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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#26524 - 06/21/10 11:34 PM Re: Overheating? [Re: MomofPrincesses]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Re gatorade - I give it to my kids full strength. They really do need the extra calories, so I don't see a problem with it. People with ichthyosis lose enough heat from evaporation to equal about an extra cheeseburger per day. Severe types can equal the loss of an entire meal. On that note, I use Carnation breakfast powder for their chocolate milk because it has less sugar and more nutrients, and is so much cheaper than slimfast or Pediasure. Same stuff, really. I also tend to use a lot of butter, milk, eggs, etc to add calories to our food.

As for the heating, Sideshow, I think that's exactly what is going on. The sweat system still works, but sweat gets trapped under the skin and makes a blister or a flake. Bacteria eat the sweat and respire out various things that make the belly button lint smell. The increased bacterial load makes us itchy, too. Not any different from going out in the yard on a hot day, sweating a lot and then finding that you itch, just that people with ichthyosis don't have to do anything strenuous to get the same reaction.
_________________________
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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#26531 - 06/22/10 05:03 AM Re: Overheating? [Re: Sideshow_bob]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
never had the blisters except from a sunburn. Try using an Aloe cooling gel after she's been outside. If the doesn't help then maybe take her to a derm or ped when she has those blisters to see what they are. My understanding of the condition is that people with ich don't have sweat glands. My face gets real read and other parts of my body get really red too. Also try taking a damp cool cloth and gently patting the red areas with it or a luke warm shower to cool her body down. If none of those help, take her to a doctor.
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26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26532 - 06/22/10 03:10 PM Re: Overheating? [Re: Adrienne1]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Jennifer -- Excellent explanation, thank you!!

And I agree that they need the extra calories! My pediatrician said that Kallie needs a very high fat diet so I always give her whatever she will eat. She LOVES fruit too so that helps a lot, she gets a lot of good natural sugar with fresh fruit but she also loves her some poptarts! 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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#26634 - 07/19/10 11:23 AM Re: Overheating? [Re: Promiseland]
Luckymum Offline
Member

Registered: 05/04/10
Posts: 29
Jennifer

Thanks for the detailed description. I have always explained to people that my daughters cannot sweat but have not understood the underlying mechanics and I know a paed told me that everyone can sweat, so it makes sense that ich kids can sweat but only as a last resort. I have never let my daughters go so fra, because I keep them inside if it gets over 30degrees Celsius or therabouts. Som it is good to get a better understanding.
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I have two daughters, both with nbCIE.

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#26750 - 08/09/10 05:02 PM Re: Overheating? [Re: Luckymum]
NARE1226 Offline
Member

Registered: 01/16/10
Posts: 13
Loc: York, PA
Along with all the other tips about plenty of fluids, I carry a small spray bottle of water every time we go out in the summer. It doesn't take up much room in the diaper bag or stroller, it's easy to refill at a sink or water fountain and Evan just loves to be misted with it when he starts to get warm! I also have a small battery powered fan that I take along if there is any chance he will be napping in the stroller. smile
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Mommy of Evan, born 12/26/2008 with Collodian, diagnosed with Lamellar Ichthyosis.
Evan has three brothers, Nathan (16 yrs.), Austin (13 yrs.) and Ryan (4 yrs.) all unaffected.

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#26751 - 08/09/10 08:22 PM Re: Overheating? [Re: Luckymum]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Not all people with ich have a sweat disorder or sweat "as a last resort."

The type that your daughter has makes sweating very difficult or practically impossible, regardless of weather condition. It is a rare and severe type of ich by definition. Heat fatigue would present a constant risk.

Other types do not have this difficulty. Most vulgaris cases have no sweat disorder. The most severe cases of vulgaris would have sweat disorder that would lead to prickly itch. But there is no heat fatigue issues related to ich. And cool and cold weather would not be desirable as it would aggravate scale build up whereas summer weather is desirable as it facilitate profuse sweating that exfoliates the scales and eliminate prickly itch discomfit. While bacterial build up on scales may contribute to itching, it is not the cause for the dreaded prickly itch. For me prickly itch happens only when I have difficulty sweating due to cool weather and scale buildup, but it would immediately stop once sweating begins. And in the summer when sweating can happen all the time there is no prickly itch at all.

Just my guess but I think the differences for the various types of ich may have to with the difference between accelerated reproduction on the one hand, and slow shedding on the other.

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#26828 - 08/31/10 02:45 PM Re: Overheating? [Re: Promiseland]
livinonaprayer Offline
Member

Registered: 11/05/09
Posts: 33
Loc: Indiana
I am still wondering if lack of sweating is just an ich defect and not entirely due to blocked sweat glands because of scale. I do not have ich everywhere on my body and still do not sweat. No sweat with heat or exercise. Just very red in the face. The only time I have sweat is on my face in very HOT HUMID weather but I am still red. When I manage my ich well, it is just very fine white snowflakes and if I'm consistent with using exfoliating lotions, it will clear up pretty decently. I have no flakes or scale on neck, chest, inside forearms, back of knees, inside elbows, tops of feet. Tops of feet are soft normal skin, but bottom of feet are hard and rough and toes are wrinkled and old looking. Same with hands. Top of hands normal, with wrinkled fingers, deeply lined hands with hard skin. I am still baffled buy this no sweating and ich. Face looks normal, but can get flaky.

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#26829 - 08/31/10 09:04 PM Re: Overheating? [Re: livinonaprayer]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Very hard for me to answer as I do not have personal experience with the types of ich that precludes sweating for all practical purposes. But it sounds like CIE or Lamellar if you have great difficulty sweating regardless of circumstances and get red in the face.

Very hard for me to understand how certain body parts that correspond to prevalence of sweat glands or where the skin rubs against each other, like back of knees or inside of elbows, generating heat and sweat are clear of scales but yet sweating does not seem to be responsible for the exfoliated areas.

I wish I could be more helpful.

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