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#27979 - 10/17/11 01:06 PM New Here
NathansMama Offline
New member

Registered: 10/17/11
Posts: 1
Hi Everyone!
My name is Becky and my son Nathan is 14 months old. He has been diagnosed with ichthyosis, but until recently wasn't quite sure what that meant. I'm not sure what type he has, I do know that it is very mild compared to what it could be. He was born with very scaly skin, and I was constantly told that he had cradle cap. I kept trying to tell the pediatrician it wouldn't go away. His legs, arms and back look similar to a dry desert that no amount of lotion touches. His bum area and his face, besides his forehead, seem to not be affected. I have taken him to one dermatologist and the only thing he said was he could give him a prescription for a lotion, but it would have a "burning sensation". He was only 2 months old at that time and I just couldn't do that.

Anyways, any advice, resources, etc. would be much appreciated. I really am at a loss here on how to help my son. I feel like he's too dry and scaly to be in the "dry skin" group, but not sure if we'll fit in here either.

Thank you,
Becky

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#27980 - 10/17/11 02:19 PM Re: New Here [Re: NathansMama]
Sideshow_bob Offline


Member

Registered: 02/11/09
Posts: 61
Loc: US, Midwest
Becky,
Welcome to the Board. It is very quiet around here lately, not sure why. There is a Facebook page called the Ichthyosis Mommy Spot. You can meet other moms and trade tips/questions if you can't get a response here. F.I.R.S.T. has several hand-outs that you can request that might answer your questions, and on this Board there is a guide some of us compiled from the Frequently Asked Questions. It is a "sticky" on the first page of the Mon's and Dad's Board.

Don't worry about fitting in, either -- my daughter has CIE and she usually looks fabulous, but she can't sweat, which I needed a lot of help with in the beginning. The question isn't whether your child is "sick enough" to make you belong, it's whether you need support and help from us.

Once again, welcome!

Jennifer
_________________________
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

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#27984 - 10/18/11 05:33 PM Re: New Here [Re: NathansMama]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Welcome, Nathan's Momma, from another Nathan's momma!

I have 3 children with ichthyosis. Nathan is my oldest, nearly 9. I know exactly what you mean about the dry desert. The best thing to do is to soak him for a nice long bath - 30m to an hour, then immediate slather him full of a good cream. So many lotions are way too thin and don't penetrate deep enough into the skin and it just dries out again. Most people around here use Aquaphor, which works really well but is really greasy, Eucerin Plus, (these two you can get for free from the company) Jergen's Ultra Healing, Cetaphil, or Aveeno 24 Hour.

The stinging prescription creams are usually because they have acids in them like lactic acid or urea that help eat through the thick skin and help it to come off. I wouldn't use them on my babies, either.

You can get a lot of help if you have a knowledgeable doctor. Most of them are flying by the seat of the pants method and don't have much experience. So often I see people get a diagnosis of ichthyosis, and if it's mild it must be IV, and if it's severe, obviously it's Harlequin! Just yesterday I was talking to someone whose doctor was having trouble determining if they had Netherton's or EHK - one is a skin too thick/blistering problem, the other is a skin too thin/failure to thrive problem.

One thing I want you to do is to check out www.firstskinfoundation.org and give them a call. They will put you in touch with someone sort of nearby through their ambassador program,and also, take a look at the family conference. The next one is in June 2012 and is in Denver. They have a scholarship available to pay for the hotel and registration fee, so you can go for only the cost of airfare. It's a huge eye-opener and a really good chance to meet some really nice people and make some friends that have the same issues as you. Not to mention, the tips and tricks those of us with older kids have come up with can save you from reinventing the wheel.

I'll PM you as well.


Welcome!!
_________________________
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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#27985 - 10/19/11 01:32 PM Re: New Here [Re: NathansMama]
kekonen Offline
Member

Registered: 12/14/09
Posts: 58
Becky,

We, much like you, didn't get a diagnosis until Annalie was about 6 months old. I kept telling the pediatrician that it wasn't just regular "baby peel" and that I wanted her to see a dermatologist. Eventually he gave us a referral and the derm was able to immediately give us a diagnosis of Ichthyosis. She wasn't sure which type, but at least we had some idea of what we were working with. Annalie's skin is really dry and flaky - it has characteristics of lamellar and CIE. We haven't had any genetic testing done yet, but we plan on doing so in the future.

We have been using CeraVe (cream in the jar) since the day we got the diagnosis. We apply it in the morning and throughout the day as needed. We've tried other creams, but we haven't found anything that works as well as CeraVe. You can buy it at most drug stores right off the shelf.

We also use Aquaphor at night after her bath. We put on a pretty thick layer which helps keep her moisturized during the night. We use the Original Formula instead of the healing formula you find in the stores. Look up the free Aquaphor post and your doctor can help you get free cases of Aquaphor. It has been a life saver!

As far as other things we use, we put RoBathol in Annalie's baths nightly. She soaks for at least 15 min and we scrub pretty roughly with a washcloth. This helps get the loose scales off. We also run a humidifier in her room during naps and at night. We stopped using it for about a month after we moved and we could really tell a difference.

We also use a couple prescription ointments and solutions. The ointment is for her ears which tend to be the driest, and the solution is for her whole body. I put the solution on twice a week and cover it with Aquaphor at bedtime.

The key is finding a good dermatologist. FIRST has a dermatologist referral program. You just need to email (mwenik@firstskinfoundation.org) and ask for a dermatologist in your area. Hopefully there is someone near you that is knowledgeable about Ichthyosis and can help you and your son.

Feel free to friend me on Facebook - Karen Peterson Ekonen. I have tons of pictures of Annalie, so you can see if she has similar skin to your son. I'm also open to answering any questions you may have.

_________________________
Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

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#27993 - 10/21/11 02:13 PM Re: New Here [Re: NathansMama]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
As someone who has Ichthyosis and was also a child at one time...I can tell you that one of the biggest stinging factors in a lotion is perfume. I always loved those bath sets with Barbie or Snoopy on them but the lotions would make me cry and turn my skin red every time!

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