Has anyone seen this?

Posted by: Lisa71

Has anyone seen this? - 01/16/05 12:13 PM

Hello everyone,

My daughter is Emma, who is now 7 1/2 months old. From what the doctors have told me, she has a "textbook case" of EHK. During the last week, she has completely "shed" her entire top layer of skin; and what is left is perfect, smooth skin! Is this typical? If so, how often will this happen? How can I maintain this smooth skin, to try and keep it as long as I can? It's very bittersweet....to see such beautiful skin on her. Any help would be appreciated. Thank you to everyone!!!!

Posted by: Deidra

Re: Has anyone seen this? - 01/16/05 04:43 PM

Evan had one spell very similar to that. Surprisingly, it was at about the same age. The difference was, it was right after he had the chicken pox. I always associated it with all the oatmeal baths or the fever. I really don't know. Unfortunately, it didn't last very long. We just continued to take care of his skin as normal. We did continue with the oatmeal baths for a while thinking maybe that had played a part. The good news was, even at 8 months, Evan made it through the chicken pox with flying colors.
I do know how bittersweet it is. Our mother's hearts want to believe it will stay that way.
Posted by: Meshell

Re: Has anyone seen this? - 01/16/05 04:52 PM

Hi Lisa, My 8 year old daughter has CIE en confetti and she completely sheads her top layer of skin after a fever of after a cold ect. She sheads from head to toe. She too has soft smooth skin underneath. Her derm. does not know why this happens. I have heard of this before. The doctors that she saw at the last Ichthyosis conference did not know why this happens either. meshell
Posted by: AngV

Re: Has anyone seen this? - 01/18/05 06:32 PM

Hi Lisa,

What you posted sounds exactly the same as what happened to my son Braden at about 8- 81/2 months! He first broke out in some sort of bumpy red rash that spread to his entire body. They thought he had some sort of infection but we never found out what kind. Anyway, after his bout on antibiotics he started drying out really bad and then started peeling from head to toe, even the palms and soles. It was very weird but his skin looked so wonderful after about a week of peeling. The only thing that got worse was his scalp - during this whole process his scalp got really scaly and that had not been the case prior to the rash, anyway -the scalp now is the worst part of his body.

The peeling was probably a little over a month ago and the thickness is now starting to come back. I also remember at about age 2 months he had a similar peeling experience but his skin had not started thickening up so it was not as noticeable. I am seeing a new pediatric derm today and I will bring it up to see if he has any explanation. If I find out anything new I will let you all know.

Posted by: pauline5

Re: Has anyone seen this? - 01/20/05 11:33 AM

Hi Guys,

I also have EHK, and I do recall my mother telling me that at times when she visited me in hospital after severe infections, my skin would look normal...and she said of the large peelings also...and skin beautiful underneath...

Sometimes I still have this occur after very hot weather, or after I have had a bad cold or flu, skin would look terrible, and then suddenly smooth...

Likewise I don't know the reason also...except to say that when the older skin sheds, it always starts out with smooth 'new skin', until that ages and thickens...

Posted by: AdamsMom

Re: Has anyone seen this? - 01/27/05 02:31 AM

Ditto for us - Adam just finished a big peel - mostly his hands and feet - the skin is SO tender and soft underneath. We've seen it before too - does anyone think its the winter weather? I've heard of it happening after fevers - Adam luckily has not had one - and after infections. But, we have neither in this case. All we notice is that in the winter months, his skin gets worse and he goes through these "peels"...
AngV - is it EHK with palms and soles effected? Just wondering as we are a rare (or more rare) breed! And its always nice to compare notes with someone
Posted by: AngV

Re: Has anyone seen this? - 01/29/05 04:01 PM

No - we do not have palms and soles affected. And now Braden has gotten bronchillitis and an ear infection and he is starting to get that red bumpy rash again and peeling again. He did also have a fever a few days ago. It must have something to do with fighting the infection.

Posted by: Sarah Helen

Re: Has anyone seen this? - 01/30/05 08:45 PM

I am 32 years old and have EHK. I have spent years tracking the peeling cycle that I have found in myself, paticularly after a fever.
My palms and soles peel (callouses and everything) about 1 days or so after a fever. My doctor said that it might be an allergic reaction that normally does not show itself but becomes apparent during a fever.
I actually got sick on purpose so that I would have a nice peel before my wedding. I managed to time it perfectly and have wonderful wedding photos.
Track your sons peels and see if you can find a pattern, I know it happens. Perhaps it is our bodies way of refreshing itself!

Posted by: PrayerKaren

Re: Has anyone seen this? - 04/06/05 10:51 PM

Hi Everyone,

I've not been on in a long time and see that there are a lot of new names out here. Wow it's great to see. Anyway, I come from three generations of EHK, my mother has it, I have it and my daughter has it.

I've never really noticed about the peeling after a fever persay, however, I have noticed in all three of us, that if we get skin infections and blister, afterwards our skin will peel off in those areas and become smooth underneath.

I am 37 and my daughter is 18, we have also monitored our skin and the different phases it goes through and have noticed that during seasonal changes our skin will get dramatically worse while the temperatures are up and down and going through the actual change from one season to the next, however, once it evens out and stays consistant, so does our skin and then it clears up.

Another thing we've noticed, is about three years ago we moved back to CA from living in Arkansas for nine years and have noticed that since being here we've not anywhere near the skin infections we got while living in Arkansas. I don't know if it's because it's dryer out here as to where it's extremly humid in AR but the whole nine years we lived there we battled with some serious skin infections on a regular basis. I remember times we would no sooner get rid of one infection and two or three days later here we'd go again.

As for the rash, the only thing I can think of is perhaps a contact rash caused by coming in contact with an irritant or perhaps an allergic reaction. If your certain it's not the measels that could be it. Another thing, when we get scabies it affects our skin far different than it does most people. With us, it will cause an itchy rash all over and those spots will turn into little blisters. The doctors don't recognise it because it's so different, but if you've tried everything you can think of such as changing laundry soap, and bar soap that you shower with etc. and you continue to get this terrible rash, chances are it's scabies. And unfortunately scabies is extremely contagious especially from children and they only have to be near someone who has it in order to contract it. So keep this in mind.

Good luck,
Karen Sawyer
Posted by: jenjen

Re: Has anyone seen this? - 10/05/05 06:03 PM

Hi there,

I wanted to post about the places to live in regard to dry weather vs humid weather.

I have had EHK since birth (34 now) my 14 yr old daughter has it to. Most of my life I lived in Fl and I produced staph infection ALL the time. I had to be on antibiodics every day, miss one day and it got ugly.

Finally me dermo did a batch of tests - cultures and determined that there was a strain of staph in the air from the humidity and that was why I kept getting infected.

I have been in research studies since I was 4, the first being at Duke University, NIH you name I've done it. I was in the original research study for Pyruvic Acid and Accutane - those dummies had me on accutane from 8 - 16 years of age.

Boy do I have stories but I have lots of contacts and I'm really knowledgeable in regard to EHK and welcome anyone contacting me about anything with EHK.

My Mom and I are were even Regional Reps for the SouthEast Division of F.I.R.S.T years ago and held their first conference for the SE area.

I hope everyone is doing well.

Warm Regards,

Posted by: pauline5

Re: Has anyone seen this? - 12/02/06 12:10 PM

Hi everyone, I have just been browsing old posts, and found this really interesting...

Firstly Karen, I think you have confirmed for me why people who have EHK may not be suited to living in Queensland Australia, like other types of Ich...because you mentioned many more infections in humid Arkansas.

Did your bodies also swell up from the humidity?? ... I find that the actual fluid retention actually causes the blistering in the first place...

I had just 5 days in Queensland 10 years ago, and that was more than enough for me...my whole body puffed up and blistered something shocking, and i actually had sunburn for the first time in my life, and my skin went orange...it was weird.

Meshell, I wonder if your daughter shed her skin after a fever because of the overheating, and perhaps the heat lifts the skin from the inside, similar to how a spa would do that from the outside...just a thought

Lastly, Jenny, I was fascinated to read the findings that you had constant infections from staph being present in the humid air...that is amazing...i had no idea that staph could be airborne...I always thought it was a surface thing...transfered to hands, and then to another person.

Thanks for enlightening me
Love Pauline [img]http://www.ichthyosis.com/ubb/smile.gif[/img]