Help with EHK

Posted by: may3332

Help with EHK - 10/29/08 09:52 PM

Hello all
I havent posted in a long time, however I am need of some help. My daughter is six now and has EHK, her entire body is covered and it is starting to get thick again. The doc we have had for a year is giving up and refering us to the UW. She was talking about Miah getting laser treatments to help the thickness.
I need some suggestions about getting the thickness to be minimal without laser treatments. She cant take any of the medications because of deadly side effects she has already had. We have tried all of the lotions there are to try and prescribed topicals since birth and nothing helps her.

HELP!!
Posted by: may3332

Re: Help with EHK - 10/29/08 09:48 PM

Melissa Yang
Posted by: Hearsay

Re: Help with EHK - 10/30/08 12:57 PM

How do you bathe her?
Posted by: Sarah Helen

Re: Help with EHK - 10/30/08 02:43 PM

Hi Melissa,
is the thickness causing pain or restricting her movement? How are her blisters?

There can be different goals in reducing thickness and different methods to get there. With myself I don't worry so much about the thickness but try to keep down the blisters and ensure that I full range of motion.
Posted by: may3332

Re: Help with EHK - 10/30/08 08:08 PM

We bathe her in oatmeal bath and johnson & johnson oatmeal bubble bath only. She cant tolerate soap
Posted by: may3332

Re: Help with EHK - 10/30/08 08:14 PM

I have been good about reducing blisters. The thickness causes her pain to the point she cant walk.
Posted by: Hearsay

Re: Help with EHK - 10/30/08 08:41 PM

Do you do any sort of rubbing for exfoliation?
Posted by: may3332

Re: Help with EHK - 10/31/08 05:43 AM

have always been afraid of hurting her. Is there a gentle kind? when she flakes she bleeds sometimes. We were seeing the same doc since birth till December last year and she never mentioned exfoliating her with a scrub neither has the new doc that is referring us to the University of WA. For dealing with this for 6 and a half years, I still have aot of questions. I appriciate your help
Posted by: Les Avakian

Re: Help with EHK - 10/31/08 09:18 PM

Hello Melissa
Welcome to our site. Our National Ichthyosis Registry is located at the University of Washington Dermotology Dept. The program director of the Registry is Dr. Philip Fleckman. He is a member of our Medical Advisory Board of FIRST, and is one of the most knowledgable, intelligent, and easy to talk to doctors I have been priviledged to know. Also, our FIRST website is www.scalyskin.org and you can contact Jean Pickford or Moureen Wenik at:info@scalyskin.org.Moureen is the program director of our Ichthyosis Support Network, and she can also put you in touch with mothers of EHK children. Take care Melissa
Sincerely,
Les
Posted by: Sarah Helen

Re: Help with EHK - 10/31/08 09:24 PM

Hi Melissa,
I've always had problems with exfoliating as I can't really scrub or it hurts. Things that I found to work was an overnight creaming session followed by a nice long soak in the tub. Once the skin is getting "water logged" and whiter looking I would actually roll it off. I use the palm of my hand to create some friction and start lightly scrubbing back and forth. The skin comes off in long rolls.
Areas to concentrate on are the back of the knees, ankles and hips for walking and the back of the shoulders and inside of the elbows for arms.
I know it is frustrating and when I was six I didn't have any patience for this stuff. There are lots of people with tips and tricks to augment the professionals that Les mentioned above. Together we can help make each other comfortable.
Good luck.
Posted by: Hearsay

Re: Help with EHK - 10/31/08 11:06 PM

Keep in mind that we have a somewhat different type - it acts and looks like EHK but does not blister.

We put the boys in the shower for extended times. I let them soak in the water/steam for a good 15-20 minutes, then get in with them and start rubbing like Sarah described. I have found that starting on the sides of the nose, the sides of the neck, around the shoulder blades, the collarbone or the armpits gets some of the skin to roll off. I use the removed skin as a source of friction to continue in other areas and do as much as I can until my hands start to prune.

Some days it hurts, but generally, even though the shower is unpleasant, afterwards results in more comfort, less smell, less itch, and better walking. For our type, we also file the hands and feet, but they are thick and calloused and full of cracks if we don't. That definitely hurts, but again, the week of comfort outweighs the hour of misery from filing.
Posted by: may3332

Re: Help with EHK - 11/01/08 05:04 AM

thank youu sooo much for the info
Posted by: may3332

Re: Help with EHK - 11/01/08 05:07 AM

Thank you for the idea I will try it. I really appreciate the help. I am going through a hard time with her skin.
Posted by: Deidra

Re: Help with EHK - 11/01/08 12:33 PM

Have you tried the sea salt baths? You can go through some of the archives for posts about those. Also, what helps Evan (16 yr. old boy, EHK) the most are daily long soaks. He bathes at least 45 minutes every day before school. He doesn't wash much (he's a 16 year old boy) which means not a lot of actual exfoliation going on. But the long baths help keep his skin more comfortable. We currently are not using sea salt.
Deidra
Posted by: may3332

Re: Help with EHK - 11/02/08 03:40 AM

No I havent because before we came here we were told that the sea salt would burn her. Recently we went to the ocean for the first time and the water didnt hurt her. I am thinking about trying the bath. Thank you for the suggestion
Posted by: Sarah Helen

Re: Help with EHK - 11/03/08 02:51 PM

I second the sea salt idea! It seems that the salt in the water conteracts the pain of the chlorine or other chemicals used to treat it. My guess is that it is more "ph balanced" and therefore less painful.

Have you tried using Aquaphor (ask your pharmacist for it)? Using the bathing routine and the aquaphor will probably make her comfortable enough to move freely.

Please know that we all go through hard times, and they end. We've been there and understand the frustration. Do your best to make her comfortable and remember that this condition goes through so many phases that this will end soon.
Posted by: Deidra

Re: Help with EHK - 11/03/08 11:25 PM

I ditto the aquaphor idea. The first time I really started using it on my son steadily after a LONG break, he was in about the third grade. He came home and wiggled his fingers and said "look mom, I can still do this!" He hasn't been without it since.
Dee