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#16695 - 10/27/04 04:42 PM New member story and hand cream question
Chunner Offline
Member

Registered: 10/08/04
Posts: 8
Loc: Constantine, MI 49042
I am so excited about this bullitin board! I can't believe in the four years of my son's life I haven't known about it! Christian is four and was a surprise EHK baby. He is my fourth and I expected to shoot out another baby(the oldest at the time was 6) and go home. He was a colodian baby and our hospital had no idea what to do with him. We were in the NICU for four days and they sent us home still not knowing what was wrong with him! It was a stressful time! I have not found a whole lot of support from dermatologists around here! We've even been to UofM in Ann Arbor, MI and Dr. Rasmuessen just says "keep up the good work". That doesn't help! We've learned as we go and I do have a good pediatrician! He is a sweet, adorable boy who knows his limits and yet really doesn't see himself as much different! Sometimes I forget that there is anything wrong with him! We use Hydrophilic ointment 2x a day. Does anyone else use this? We got it at the hospital when he was in for infection at 6 weeks and its the only thing I've found that soaks in well and doesn't leave him or his clothes gross! What is a good product for hand and foot cream? Are alph-hydroxy creams good to use? I still have so much to learn so I'm looking forward to this support network! I feel like my husband and I are not alone in helping our little guy any more!

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#16696 - 10/28/04 12:45 AM Re: New member story and hand cream question
AdamsMom Offline
Member

Registered: 05/29/02
Posts: 26
Loc: Alpharetta, Georgia, USA
Your story sounds SO similar to ours... Adam is 2 and 1/2, our second son and he has EHK. He was also born with a collodian membrane - you're son is actually the only other EHKer I know of who was born with a membrane. Are you son's palms and soles affected? Adam's are - pretty severly - other than that his skin looks pretty good. I've never heard of the hydrophilic cream you use. What is in it? It is by prescription? We use really any lotion all over, LacHydrin 12 on his hands and feet and aquaphor. I look forward to sharing info. with you....

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#16697 - 10/28/04 12:14 PM Re: New member story and hand cream question
Chunner Offline
Member

Registered: 10/08/04
Posts: 8
Loc: Constantine, MI 49042
Its nice to talk to someone who can relate! Christian's hands and feet are pretty bad! For a while there, I didn't think that he would ever wear shoes but his palms and soles are just thick. He has a huge build up on his knees. I just tried this stuff from Bath and Body Workd called i'm in the mood for scrub in their True Blue section and it works great at getting the thick stuff off and smells good! Hydrophilic is what the hospital gave me as a prescription aquafor. It's over the counter so any pharmacey can order it! Its from Fougera. It has Light mineral oil, and white petrolatum as the main ingredients! I've tried everything and I always come back to this. Does Adam's scalp struggle with scales? Christian's is horrible! What do you use? Thanks for the hand cream advice!
Quote:
Originally posted by AdamsMom:
Your story sounds SO similar to ours... Adam is 2 and 1/2, our second son and he has EHK. He was also born with a collodian membrane - you're son is actually the only other EHKer I know of who was born with a membrane. Are you son's palms and soles affected? Adam's are - pretty severly - other than that his skin looks pretty good. I've never heard of the hydrophilic cream you use. What is in it? It is by prescription? We use really any lotion all over, LacHydrin 12 on his hands and feet and aquaphor. I look forward to sharing info. with you....

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#16698 - 10/29/04 01:14 PM Re: New member story and hand cream question
AdamsMom Offline
Member

Registered: 05/29/02
Posts: 26
Loc: Alpharetta, Georgia, USA
Thanks for your reply. I will order the cream. I do love Bath and Body's blue line of stuff - it works well on Adam too. His hands and feet are very thick - feet are the worst. What is your routine with his hands and feet? How do you get the skin off? Its really hard - he just cries so hard. We do have trouble with his scalp. We use P&S shampoo and P&S liquid - any pharmacy can order it for you. It works pretty well. Its so nice t ohave found you on the site. EHKers are pretty rare but affected palms and soles are even more so!!!

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#16699 - 10/31/04 02:43 AM Re: New member story and hand cream question
Chunner Offline
Member

Registered: 10/08/04
Posts: 8
Loc: Constantine, MI 49042
To be honest with you, we don't do a whole lot for his hands and feet outside of the normal regiman. I would like to though because they crack and bleed and normal creams don't seem to work! I'm so glad that you know so much about other EHKers because I've only talked to one other. I hope the cream works for you and maybe together we can figure out these guys hands and feet! I'm so thankful for your openess to help! Thanks for the P&S idea. I've used to shampoo but not the liquid so we'll give it a try!
Quote:
Originally posted by AdamsMom:
Thanks for your reply. I will order the cream. I do love Bath and Body's blue line of stuff - it works well on Adam too. His hands and feet are very thick - feet are the worst. What is your routine with his hands and feet? How do you get the skin off? Its really hard - he just cries so hard. We do have trouble with his scalp. We use P&S shampoo and P&S liquid - any pharmacy can order it for you. It works pretty well. Its so nice t ohave found you on the site. EHKers are pretty rare but affected palms and soles are even more so!!!

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#16700 - 10/31/04 07:15 PM Re: New member story and hand cream question
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Just to jump in, my son (22mo) and husband both have EHK with affected hands and feet. I don't do much for the hands - we file the palms and wrists about once a week, but do nothing to the fingers except trim the nails and hangnails as needed.

The feet, on the other hand, we keep after as much as possible. I file them about twice a week, sometimes more. He cries, but it doesn't sound like the pure torture cry he has when we do his hands. Usually, I give him something to distract him and he sits and waits for me to finish.

We're using Cetaphil during the day, and with winter coming I've been putting Aquaphor on his hands and feet at night. We also have a humidifier on our heating system, and a small one in both bedrooms.

Brian uses a Dremel on his feet every few weeks. He also wraps them in plastic for about 2 hours in the afternoon so he can walk.

We've tried the alpha-hydroxy, urea, and lactic acid creams, but none of them do anything for our particular disorder. We have ichthyosis-en-confetti, which looks like EHK, but the gene doesn't match up. We have also tried some of the topical retinoids, but they take off too much to be very usable, and we won't even consider using the oral retinoids because of the side effects.

Incidentally, we're in Ohio - we grew up in Cleveland, and moving south has made a huge difference in lifestyle for Brian. He was in North Carolina for a while. His skin was great, but he didn't quite fit in with the culture down there.

Jennifer
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#16701 - 10/31/04 08:09 PM Re: New member story and hand cream question
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I just felt like I had to mention this story. I also went to Ann Arbor, probably 20 years ago and saw Dr. Rasmussen. I am surprised to hear that he is still around because I remembered him as old.
He diagnosed me with Vulgaris and that's what I thought I had and how I lived my life until age 25 when I went to Southwestern Medical Center in Dallas, TX.
They diagnosed me with EHK and showed me Dr. Rasmussen's original diagnosis that said I either had Vulgaris or EHK so he basically picked one and called it Vulgaris. After that, I was pretty much turned out into the world by U of M with the offer of Accutane, which at that time, was only in human trial stages and not readily available. At 12 years old, my parents let me make the bulk of the decision myself and I opted not to take the medicine and for that I will always be grateful.
I tell this story not to disparage Dr. Rasmussen, but to let you know not to turn to U of M as any kind of support system because basically, once they see you and let the med students take your picture, they are done with you.
I have found better support, treatment and advice at other Universities, many of which are within a reasonable drive for you.
I live in Northwestern Michigan myself, so it's nice to hear from someone in the "neighborhood".

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#16702 - 11/05/04 11:43 AM Re: New member story and hand cream question
AdamsMom Offline
Member

Registered: 05/29/02
Posts: 26
Loc: Alpharetta, Georgia, USA
Adam's hands and feet have deep cracks too. Aquaphor is the only thing that I think helps at all. I agree that none of the alphas or ureas have made a difference. We are thinking of using the topical retinoids. Adam's hands and feet are so thick I couldn't imagine it taking off too much.
Jennifer - what kind of file do you use of your son's feet? do you soak them first? I need to try that with Adam. I wish we would have had more time to talk with eachother at the conference! I would love to talk to you guys more, share pictures, etc... my email at home is kklafter@msn.com

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#16703 - 11/05/04 06:28 PM Re: New member story and hand cream question
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Hey, Kelly!

The file we use are the big 100 grit ones like they use in the acrylic nail salons. We go to the local beaty supply place and get them for about $.30 each. They last about 2-4 filings and are somewhat washable. I use the aquaphor on him at night and sometimes at naptime.

We do the filing dry, about every 3 days. That is often enough to keep the skin from cracking and bleeding.

Are either of you having issues with the eyes yet? Nathan started to get watery, irritated eyes about 2 months ago. We are now putting Lacrilube in every night. I am so afraid that his corneas are starting to erode like Brian's did. We have an eye appointment coming up in 2 weeks.

I started another board where we can post pictures and keep them private. It is at http://groups.msn.com/ichthyosissupportboard

I don't want that board to overlap too much with here, but I thought it might be nice to have a private board where everyone can share openly without worry about lurkers. There is a lot of room for pictures on there without sucking up Laura's bandwidth.

Jennifer
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#16704 - 11/13/04 03:20 PM Re: New member story and hand cream question
Shirlil Offline
Member

Registered: 12/23/03
Posts: 22
Loc: L.A., CA USA
All;

Just wated to share with everyone about a new moisturiaing cream we have been using. It is from Neutrogena and is called "Body Moisturizer, Daily theraputic Lotion", Norwegian Formula. The results for my daughter has been great. Her skin feels baby soft and it feels the smae for atleast 24 hours, if not more. Just wanted to share this.

Jennifer;

How do I get on the board you have started? If you intend to keep it private I certainly understand.

Sherry

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