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#16772 - 08/11/05 06:35 PM pain management - EHK newborn
Evan's Mommy Offline

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
Hi All,

Our beautiful son Evan was born on July 1st. Evan has EHK, we are not sure which one at this point. We spent a very long five weeks in the NICU and are finally home. Can anyone provide any insights into pain management for infants with ichthyosis? Evan gets some morphine before his bath and dressing change and then we simply dose tylenol as needed. Evan's skin looks so raw & sore that any adult would probably be bedridden.

PS - I am so glad that this board is here, it has been a tremendous resource for my husband & me.


#16773 - 09/05/05 05:17 AM Re: pain management - EHK newborn

Dear Evan's Mommy (and Daddy),

I know what you're going through. The neonatologist gave us a never ending supply of infant Tylenol when my son was released from the hospital 3 days after his birth. Not only did my son have EHK but he also had colic. What a nightmare. Talk about the baby blues, you just don't know what to do to ease their pain. The only good advice to give you is to keep his clothing loose including diapers. We also put one of those mattress pads that looks like egg carton cushioning in his crib.
Good luck to you.

#16774 - 10/28/05 02:03 AM Re: pain management - EHK newborn
Linda Evich Offline

Registered: 10/24/05
Posts: 15
Loc: Bellingham WA USA
Hi Kimberly - congratulations on your little boy! I don't have children but do have EHK AND a mom who was sent home with a child who had essentially lost all her skin in the birth canal! She was beside herself, but, as she said, she was determined to take the best care of her new daughter that she was capable of. This was back in 1961! When she bathed me, she was very gentle and slow about it. Quickly after drying me, she would smoothe on Lubriderm, which I use to this day! This would keep my skin supple and comfortable for several hours. As far as diapers, my mom says putting diapers on me was a NONO because my skin would burn from the soiling, so she would lay me down on top of the diaper at night which, because I was a little girl wasn't a problem - being that you have a little guy, might be a bit more of a challenge (smile). Blistering was a huge problem especially my feet because shoes were not made for comfort in those days! Patent leather was the bane of my existence and mom's. I read in one of the emails about clothing your little one in all cotton. I'd add that there should be no synthetic colors at all. Use naturally dyed clothing. I would imagine that your babe will not likely be rambunctious and a real mover. We tend to learn early on to be careful of our movements. I never crawled because of my fragile knees. I learned to walk at the ripe old age of 18 months. I've given you the highlights of my mom's experience. Please let me know if you'd like to know more. I'd be happy to oblige (for my mom!)


#16775 - 11/13/05 02:26 AM Re: pain management - EHK newborn
Lisa71 Offline

Registered: 10/20/04
Posts: 23
Loc: Westlake, OH United States
HI Evan's Mommy,

My daughter was born with EHK last June, and some of the tips I received that helped are:

Heat the lotion you use (either in the bath water or micowave the water in a cup/bowl and put lotion container in that for a few minutes)

Use a bigger diaper (I use aquaphor on my daughter and had a tough time with her wetting thru...keep the aquaphor away from the diaper area)

use loose fitting clothes

I was afraid to use too much tylenlol, but I probably should not have been so afraid, my daughter may have cried less

I now take everything in the bathroom with me (towels, lotions, diapers, clothes) so I don't have to leave and go to a cold room

My daughter cried every time I did her lotions, now that she is 17 months old, she cries less. Now the challenge is catching her and keeping her still to get the lotion on!


#16776 - 11/14/05 05:10 PM Re: pain management - EHK newborn
Angel24755 Offline


Registered: 05/13/05
Posts: 633
Loc: PA
[QUOTE]Originally posted by Lisa71:
[B]HI Evan's Mommy,

>>Use a bigger diaper (I use aquaphor on my daughter and had a tough time with her wetting thru...keep the aquaphor away from the diaper area)<<

Just a little note on Aquaphor and diapers...
My three year old son and 18 month old daughter have Lamellar and we use Aquaphor at bedtime (Curel Ultra Healing lotion during the day). I have noticed that some diapers hold up better to the Aquaphor than others. My daughter wears Pampers cruisers and when I put Aquaphor on her before bed, I try to do it a little early and then change her diaper a second time before we go to bed...usually an hour after I put the aquaphor on. This prevents her from wetting through. I have noticed that the Aquaphor seems to kill the elastic on the diapers so once the aquaphor soaks into the skin (and clothes) you can put a new diaper on and the elastic stays in better shape through the night. I have noticed that Huggies hold up a little better to the Aquaphor but I like the Pampers cruisers because they are a bit more flexible. We don't have a leak problem during the day because we use lotion instead of Aquaphor.


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