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#9557 - 12/02/00 11:05 PM NEW MOM HAS QUESTIONS???????
LESLIE Offline
Member

Registered: 12/02/00
Posts: 6
Loc: OCEAN SPRINGS MS
I am the proud new mother of a six week old son. He was born as a collodian baby. He was in the NICU for 1 month. He is home now and doing well. His skin is doing well. He has some dryness on his chin and his neck and under his arm. But nothing real severe. His skin was very red the first couple of weeks but is now a beutiful normal color. He has not had a biopsy but the neonatoligist diagnosed him as having ichthyosis. We saw a dermatoligist a week ago who prescribed tar baths once a day.caramel 40 twice a day and and something called rea-lo four times a day along with his aquafhor.For the most part he has What seems like normal delicate baby skin. I used these things for two days.They seem to harsh to me.Does anybody have any experience with any of this products? What is the purpose each product? We have not been able to get in touch with our dermatologist. we do not know what type of ichthyosis. Please give us some advice.

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#9558 - 12/04/00 01:52 AM Re: NEW MOM HAS QUESTIONS???????
OOske Offline
Member

Registered: 08/29/00
Posts: 36
Loc: Belgium St-Lenaarts
hello, this is the mom off Sophie, she whas also born as collodionbaby and stay 3 months in hospital.
You are doing fine but every baby is different and all products are also different.
You will try the first months alot thinks and alot creams, untill you will find the best one for your baby.
It's also verry inportent that you know as fast as possibel, to know what type of ichthyosis your baby has.
Every type is different and needs other creams.
My girl has now lammelaire ichthy and use
eucerinum cream with aqua and 10% ureum,
she feels fine with her cream.
It's also nice to warm the cream a little, then the baby will not cry but think it will be a good massage.
We all hope to hear from you soon and hughes to you and your husband and the little baby.
bye , and remember god loves us all, nometter how we are.
Friend from Belgium. Aida

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#9559 - 12/04/00 11:52 PM Re: NEW MOM HAS QUESTIONS???????
marcsmom_dup1 Offline

Member

Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
Hi Leslie,

I am the proud mother of a 3 1/2 year old named Marc. He, too, was born a collodian baby. When he was born, the doctors told me that once the collodian membrane came off, my son's skin would either be "normal" or he would have one of two kinds of ichthyosis: lamellar or CIE. Marc has lamellar, which they tell me is one of the more severe types.

Every child is different and creams that work for one, may not work for others. Another thing I learned is that sometimes a cream will not do anything for Marc's skin after some time. For whatever reason, the cream is no longer effective. It could be the weather or just the cycle his skin is taking-who knows!

I have learned that I get the best advice from other moms and dads who are dealing with this condition everyday.

When Marc was born, he spent 15 days in the NICU. The only cream they used on him was Aquaphor. Believe it or not, it is pretty much what we still use today. Aquaphor will not harm your baby. It is similar to vaseline, and it helps to retain the moisture in your baby's skin. I gave Marc a bath 3 times a day for the first six months of his life. After each bath, I rubbed him down with Aquaphor. As he got older, we tried aquaglycolic lotion, a compound of eucerin mixed with 10% urea, and Problem Dry Skin from Neostrata (PDS), among others. We had the most success with the Aquaphor and the PDS. Presently, we are using Theraplex on his face with great results.

Basically, you have to take one day at a time and test certain creams to see what their effects are.

It is important to try to determine the type of ichthyosis your child has so you know what course of action to take.

I could go on forever about my son and how I treat his skin. I think he looks awesome and I truly believe it is because we take such good care of his skin.

I don't want to take up much more room. If you want to talk further, please e-mail me at DenmarcNY@aol.com. You should also join FIRST (Foundation for Ichthyosis and Related Skin Types) if you haven't already done so. They are a great group of people and have a wonderful support group where you could talk to other moms who are going through what you are.

Take care. Please feel free to e-mail me.
Denise

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