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#23856 - 02/14/09 10:56 AM Random Questions
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
1. does anything you eat have ANY effect on whether you get blisters or not?

2. do you have finger/toe prints? (especially for those with palmar/plantar EHK)

3. is an infection really that noticeable or should I be checking temperature regularly?

4. which hurts most, the blisters or cracked skin, like behind the knees?

5. does your EHK baby sleep in positions not recommended by the pediatricians? (side, stomach, etc.)

Thanks. I've been up most of the night with Ivy. She's just been fussy all night long, but I can't seem to find many blisters. I pop them when I find them, and usually that helps her and she can relax then and go to sleep, but tonight she's just been cranky. I did notice a "crack" (for lack of a better word) where the skin behind her knee separated. I'm wondering if this spot could be the source of distress. Anyways, at least she's partially asleep now, although I don't think I can go back to sleep. Thanks for your help. This community has been a great source of information and relief for me.
~Lizzy

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#23859 - 02/15/09 01:31 PM Re: Random Questions [Re: MamaH2]
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
Hello,
I'm sorry, I am not good with following names and ages etc. of the people who post. Because of that, I don't remember how old Ivy is. What I do want to remind you is that all babies have fussy nights whether they have ichthyosis or not. Don't forget to watch for the unrelated reasons when your baby is fussy. I will tell you some of my experience with Evan who is 16 with EHK in an attempt to answer a couple of your questions.
1. I have never noticed a connection with what he eats and his blisters.
2. He does have fingerprints but the bottoms of his hands and feet are only minorly affected.
3. I notice (and Evan does too) when he has an infection. His blisters are raised, pus-filled and red around them when he is infected. The raised portion of the blister is yellowish. It oozes once they pop. Now he also feels them coming on they become itchy and then painful if I am understanding his description right. He feels he knows where an infected blister is going to show up before he sees it. On a second note, he seldom had a temprature with his infections. It wasn't until recently that he began having fevers with his skin infections. That one has me puzzled.
4. Thankfully, Evan doesn't get many cracks so I can't answer that question.
5. Evan so refused to be on his belly as a baby that we had to "force the issue" during his waking hours so that he would develop those important back and neck muscles. I don't think babies were encouraged so strongly to sleep on their backs when he was a baby. I am pretty sure he used to sleep on his side with a towel rolled up at his back to keep him on his side. Funny how those memories fade.
I hope that helps.
Deidra
_________________________
Dee

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#23860 - 02/15/09 11:26 PM Re: Random Questions [Re: Deidra]
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
Thanks for the information.
Ivy is almost 3 months. And luckily she sleeps much better than my first child, who didn't sleep through the night until he was about 15 months old! Ivy sleeps at least 5-6 hours uninterrupted every night, YAY! She is a very good baby and for the most part only cries when she is in pain, or hungry. But we an tell the difference in her cry. As for my questions, she doesn't have fingerprints or toe prints, I think she may grow up to lead a life of crime because of this! hehe. but I know at birth she at least had partial prints, so they are under there somewhere. She loves to be on her belly while sleeping, but not when awake. And her favorite way to sleep is on her side. I just don't have any point of reference for this condition, so all the help and information is useful. Knowledge is power right.
~Lizzy

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#23861 - 02/16/09 04:06 PM Re: Random Questions [Re: MamaH2]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hello,
since I was an EHK baby 30-ish years ago things have changed but I will answer your questions in case something helps.

1. does anything you eat have ANY effect on whether you get blisters or not?
No, not one bit in my experience

2. do you have finger/toe prints? (especially for those with palmar/plantar EHK)
I don't have palmar/plantar and I do have prints - no life of crime for me!

3. is an infection really that noticeable or should I be checking temperature regularly?
I never get a temperature with an infection as it is very localized to the area of the blisters. If I have a temperature due to the flu I get itchy and then I peel a couple of weeks later.

4. which hurts most, the blisters or cracked skin, like behind the knees?
There are different types of blisters. The "deep" ones hurt more and have more "burning pressure" than cracks. Cracks are painful in an annoying, stinging kind of way. Are you sure the crack behind Ivy's knee isn't just a crevasse in the skin to allow mobility? Is it red at the bottom of the crack?

5. does your EHK baby sleep in positions not recommended by the pediatricians? (side, stomach, etc.)
I don't know how I slept as a baby but everything has changed anyways. I sleep on my side all the time now.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#24062 - 03/26/09 06:26 AM Re: Random Questions [Re: Sarah Helen]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Sarah great way to explain it.


When I get cracks in my skin I soak the crack in vaseline or petroleum jelly for a few hrs and then let it breathe for a coupl more hrs, then soak it again. It'll allow it to heal closed, but not overhydrate the area

Cindie
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#24285 - 04/29/09 02:30 AM Re: Random Questions [Re: MamaH2]
shelly williams Offline
Member

Registered: 04/28/09
Posts: 6
Loc: vinita, ok
I have a daughter who is 15. She does not have finger prints. Hopefully she will not realize the crime opportunity. Food has never caused her to blister. The deep blisters under layers of the skin is what hurts her the most. Just FYI, Make sure you pop blisters with a sterilized needle and then put bactroban on it. There are occasions when my daughter will have to pop the same blister 3 or 4 times a day. When Jasa was little,I thought she was crying because of skin pain. Finally figured out she had colic. The only thing that helped her was Levsin drops. Its a prescription medication. Sometimes it was the skin and sometimes it was other things. shelly
_________________________
shelly williams

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#24286 - 04/29/09 02:41 AM Re: Random Questions [Re: Sarah Helen]
shelly williams Offline
Member

Registered: 04/28/09
Posts: 6
Loc: vinita, ok
Just fyi, every kid is probably different on skin infections. Jasa's skin will be red around the blister and the sore will grow quickly within hours. When she was little her pediatric doctor would give me a few sample dosages of an antibiotic. The kind you have to add water to. It seemed like it always happened on the weekends. I would start the antibiotic and then take her to the doctor on Monday. The skin infections spread so fast on her no one believes it until they have witnessed it. You will get to the point when you can tell the difference between an infection and a normal blister. Alot of blisters are caused by clothing and when Jasa was a baby I didn't let others hold her to much. She wouldn't sleep. You know how family members like to pass the baby around. This was too much for her. Feel free to ask any questions.
_________________________
shelly williams

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#24287 - 04/29/09 02:43 AM Re: Random Questions [Re: MamaH2]
shelly williams Offline
Member

Registered: 04/28/09
Posts: 6
Loc: vinita, ok
Jasa don't get temperatures with skin infections but the blisters are different. They will ooze with yellowish or white looking liquid not clear.
_________________________
shelly williams

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#24312 - 05/01/09 01:09 PM Re: Random Questions [Re: shelly williams]
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
Wow. Thanks for the info! I hadn't checked back here in a while. We've kind of gotten to a plateau with Ivy. Her blisters have slowed down quite a bit, and we've noticed that elastic, polyester, and too much heat and friction do cause most of the blistering, but sometimes it's just random too. Her hands and feet continue to build up...and I don't really know what to do about that. I just try to keep the skin from tagging by snipping it off if it's already peeled back a little. Still no infections! She's not in a scaling phase yet either, so we're in a happy place. The one thing I have noticed and want to do something about is the build up in her ears. Should we get that cleaned out? I try to keep the outside of her ears clean of skin..er..dead skin, but the canal is so full that at her last pediatrician visit they couldn't look in! I'm getting better about not worrying, or at least I'm trying. Thanks for your help.
~Lizzy

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#24325 - 05/02/09 05:24 AM Re: Random Questions [Re: MamaH2]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Lizzy, srry I wasn't able to talk to you when you spoke on the phone with my mother... TJ doesn't blister much. Only if he has an allergy or gets too hot. His ears are bad, we've gotta take him to an ENT to get them cleaned out.... Give me a call tomorrow afternoon (or my mom) and we can let you know what we've done when it came to me and now him!
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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