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#23548 - 12/30/08 02:53 AM New to posting
Austanel Offline
Member

Registered: 10/29/07
Posts: 6
Loc: Anaheim, Ca.
Hi I'm Stacy. I've only posted on here one time. I am always on here reading and getting information. I have a have 3 boys who are 7, 3, and 1. My two younger boys have CIE. My oldest is not affeced.
We have had a lot of struggles with my 3 yr old. He has been thru so much. He's been hospitalized many times. For infections and when he was younger for respiratory. Now he is doing very good except for the scratching. He scratches constantly until he bleeds. His hands have to always be covered. Which he also has MRSA which we think is from the scratching. He is also allergic to many foods that I've heard has nothing to do with the Ichthyosis. His skin is doing good other than the sores from scratching. It's dry but not peeling and as red as it used to be. It goes thru cycles. We used to use aquaphor but stopped and only use vaseline and that has helped tremendously. We also use Urea on his head which really works great.

My youngest boy doesn't have it so bad. His skin just looks a little dry. he doesn't really peel that much. We haven't had many issues with him. Only with asthma much symptoms not related to ichthyosis.

I just wanted to come on here to tell you guys about my wonderful boys. Would like to chat with whoever I can and get as much info and different ideas. Thank you for your time. Oh and my boys names are Austin, Breyden, Christian. ABC

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#23553 - 12/30/08 09:57 AM Re: New to posting [Re: Austanel]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Hi Stacy and welcome! I'm very new to all of this but my son Brandyn has lamellar ichthyosis and I'm happy to chat anytime. My e-mail is mgotfried@urban-ent.com

Brandyn had an MRSA infection while in the hospital. I assume he still has MRSA on his skin but not in his blood but how do you know if it has gone into the blood again? He scratches a lot so I'm just curious.

Take care, chat soon smile
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#23566 - 01/01/09 12:47 AM Re: New to posting [Re: Austanel]
snackmom Offline
Member

Registered: 01/29/08
Posts: 39
Loc: mechanicsburg, PA, USA
Welcome to the board Stacy!

My husband and my youngest son have EHK. David has had 2 experiences with MRSA. Fortunately for us it was the community strain and not the hospital strain. Both times the medications worked well for him. After his second infection his pediatrician strated him on a maintainance medication that we put his nose once a month for 5 days. We also add bleach to his bath and the combination has been extremely effective! smile

As for the scratching- we have never really had this problem with David. We keep his nails cut really short and the few times he has been scratchy we got away with an over the counter hydrocortizone cream. Unfortunatly it does not sound like that would work for Breyden. frown Have you tried benedryl or Zyrtec?

Happy New Year!
Christine

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#23568 - 01/01/09 09:53 AM Re: New to posting [Re: snackmom]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Christine, the derm said he's too young for an antihistamine frown We go back to see him at the end of Jan so I'm going to speak to him again. We have started using an oatmeal bath which does work well but not completely. I cut Brandyn's nails everyday because they grow SO fast! Thanks for the info smile
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#23596 - 01/03/09 09:59 PM Re: New to posting [Re: brandynsmum]
Austanel Offline
Member

Registered: 10/29/07
Posts: 6
Loc: Anaheim, Ca.
Ya we have had many MRSA infections with all my kids but it is pretty much controlled now. I dow the same thing the bleach baths once a week. I use white sheets when he sleeps and I bleach his socks.

As for the scratching we have tryed everything. Benadryl doesn't work we have prescription medication called Atarax which helps but don't want to constantly keep him on medications. We keep his nails short too. He uses everything to scratch not just his hands. He rubs his feet together or hands. He uses corners the floor. Whatever he can find he's very resourceful and sneaky. At nite we keep braces on his hands and feet to keep him from scratching cuz he can get everything else off. We just5 worke with him and keep him moisturized.

Thank for your response. I love hearing from people with similar issues. Thank you Stacy

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