Bullous ichthyosis/EHK

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hough-coles
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Joined: Mon Aug 26, 2013 11:58 am
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by hough-coles on Wed Sep 18, 2013 1:51 pm

Bullous ichthyosis/EHK

My daughter is 16 months old and has bullous ichthyosis keratin 1. Her skin seems to be controlled well with creams and bathing, there are the occasional build ups as well. However, her hands and feet are totally unpredictable. She has Palma-plantar so she had thick yellow skin on palms and soles and really thin skin on hands and feet the has a lot of flakes, build up and blistering. At the moment I only put dermol cream on as anything too thick or oily makes the skin too got and blister. She doesn't wear socks and has hands and feet uncovered at night times because of them overheating and blistering. I'm not sure how to make these areas any better. It's not the same as the rest of her body as I know what to do if say her belly was bad. Also her scalp has thick scaling i cant get rid of, i use cocois over night and capatal every morning. Nobody seems to have any answers. Even the specialists dermatologists don't have a clue about the condition and I seem to be making it up as I go along, asking people who have the condition also for help. Are you able to shed any light on creams, techniques, solutions???

Ichthyosis Support Group
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Joined: Thu Sep 19, 2013 10:26 am
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by Ichthyosis Support Group on Thu Sep 19, 2013 11:34 am

Re: Bullous ichthyosis/EHK

Posts on talkhealth online clinic should, and will, be answered only by the medical expert panel. Please would patients and patient organisations refrain from directly answering other patients questions and giving medical advice. The medical experts for this online clinic will be answering questions throughout the week 18th-24th September. This clinic is probably most relevant to patients in the UK as treatments and advice may vary from guidelines and practice used overseas.

Thank you
Ichthyosis Support Group

RachelSee
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Joined: Fri Sep 20, 2013 1:02 am
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by RachelSee on Fri Sep 20, 2013 1:17 am

Re: Bullous ichthyosis/EHK

Hello, Adam. I read your responses here and your article with interest. I was unaware of the earlier studies and thank you for bringing them to my attention.

I have two followup questions for you:

The results published by Mason (1952 and 195), Schneck (1954 and 1965) and Wink (1961) appear very compelling. (I can't tell if Bethune (1962) and Kidd (1966) reported new results or if they were merely repeating the results published by Mason, Schneck and Wink.)

1. Since those studies have been published, are you aware of any other instances that have replicated those results? If those results have not been replicated, then why not?

2. And in your own experience treating patients with severe ichthyosis with hypnotherapy, have you personally observed similar improvement in the condition of your patients' ichthyosis?

I look forward to seeing your response.

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Dr Mary Glover
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by Dr Mary Glover on Fri Sep 20, 2013 9:52 am

Re: Bullous ichthyosis/EHK

In response to the first posting - it can certainly be very difficult to help imrpove the skin of the hands and feet, and I am afraid that there are no quick fixes. You mention that she has been seen by specialist dermatologists. Would you mind if I enquire whether the team looking after have a particular expertise with blistering forms of ichthyosis?
Dr Mary Glover
Consultant Paediatric Dermatologist

hough-coles
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Joined: Mon Aug 26, 2013 11:58 am
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by hough-coles on Fri Sep 20, 2013 11:56 am

Re: Bullous ichthyosis/EHK

Thank you for your replies but I'm very sceptical on how hypnosis can cure a mutated keratin 1 gene. I'm aware other people have tried to actually give me some advice on something that could benefit my daughters skin, yet their comments have been deleted because they are not 'experts!' In my experience even the specialist derms don't have anything useful to say to help my daughter and it's from trial and error and from others with the condition giving me advice and ideas that have helped them. This forum
Is so experts can help, but I've had more help on the friends of ichthyosis site on fb. Looks like I'll be trying more things out myself to help my daughter, as this forum and experts have yet again failed to come up with the goods. My faith in the medical professions is surely diminishing with every contact I have!!

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Dr Anton Alexandroff
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by Dr Anton Alexandroff on Mon Sep 23, 2013 9:38 pm

Re: Bullous ichthyosis/EHK

Dear Alex,

Good evening. I completely agree with Dr Glover that bullous congenital ichthyosiform erythroderma of Brocq (BCIE) or epidermolytic hyperkeratosis (EHK)) can be very challenging to manage and that it might be helpful if your dermatologists have a particular expertise with blistering forms of ichthyosis (as I am sure they do).
I can not stress enough that the advice on how to manage your daughter should come only from your dermatologist who personally sees and manages your daughter's difficult condition. However, in very very general terms keratolytic creams and lotions containing urea (often unfortunately not well tolerated because of burning/stinging), topical tretinoin or vitamin D (cautiously) preparations (which also can cause irritation) and/or topical antiseptic preparations (e.g. dermol) or topical antibiotics and occasionally oral antibiotics maybe helpful (-all these should be prescribed /advised by your dermatologist!).
however if you find dermol useful you may want to try Eczmol which is a very effective antiseptic in an emollient base ands available on prescription and over counter. As you probably know EHK can be exacerbated by skin infections.

I hope this is helpful.
With best wishes,
Dr Anton Alexandroff MRCP(UK) PhD FAAD FRSM
Consultant Dermatologist in Leicester and Bedford
www.alexandroff.org.uk
twitter @bedford_skin_dr
blog: http://privatehealthnews.co.uk/category ... rmatology/
Dr Anton Alexandroff
Consultant Dermatologist, Honorary Senior Lecturer & BSF spokesperson - FRCP, CCT (Derm), PhD, FRSM, FAAD

http://www.talkhealthpartnership.com/on ... ndroff.php

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Dr Anton Alexandroff
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by Dr Anton Alexandroff on Mon Sep 23, 2013 10:45 pm

Re: Bullous ichthyosis/EHK

Dear Alex,

here are a couple of links which might be helpful:

http://www.ichthyosis.org.uk/bullous-ic ... keratosis/
http://www.dermnetnz.org/scaly/ichthyosis.html

with best wishes,
Dr Anton Alexandroff MRCP(UK) PhD FAAD FRSM
Consultant Dermatologist in Leicester and Bedford
www.alexandroff.org.uk
twitter @bedford_skin_dr
blog: http://privatehealthnews.co.uk/category ... rmatology/
Dr Anton Alexandroff
Consultant Dermatologist, Honorary Senior Lecturer & BSF spokesperson - FRCP, CCT (Derm), PhD, FRSM, FAAD

http://www.talkhealthpartnership.com/on ... ndroff.php

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