I'm looking for any advices that could help. My friends baby is 2 months old and has ichthyosis (they don't know if he has a syndrome yet, but it's also possible). He has red spots that come and go and probably itch, mostly around his eyes, on his cheeks, around his ears and on his chest. My friends don't know if he's allergic to something, but the baby cries sometimes a lot and have flatulences (since he's born). His mother is trying a diet without beef hormones right now. Does somebody have other suggestions? I know that some fabrics irritates him and that his skin seems better with cotton. But will it be always the case? Thanks for your help & hope the best for you all.

Hi, Cat! I'm not quite sure where to begin with the information you have given. One good place to start is with FIRST. www.firstskinfoundation.org

They have a medical advisory board where they can address figuring out what type the baby has, which leads to better advice because there are so many types. They also have a volunteer roster of affected people that they can match you up with to make a local friend.

Generally, ichthyosis responds well to cotton clothing, cream and baths. Odds are good that the red spots are not allergies, as only one type of ichthyosis is really associated with allergies. That doesn't preclude the baby from having sensitivities for other reasons.

Hi! finaly, the diagnosis is Netherton syndrome.

From what I understand, it means that the child will have ichthyosis, eczema (he already has a lot and it itches), may dehydrates more easily than others kids, probably has allergies (it may be what triggers his eczema right now) and may be smaller than expected (because of the calories lost in fluids?).

What I would like to know:

Is there developmental delays that come with this syndrome?
What kind of allergies are the most common?
Is there a book or really complete website for the skin care of that particular disease (understand: something that includes eczema & ichthyosis)?

Thanks for answering! It's quite a stress to accept a baby has NS, so I hope you can share some infos about your experiences and tricks to deal with that skin condition.

Generally there are not intellectual delays with NS, but physical delays are not uncommon. Netherton's is a problem where the top layer of the skin, the stratum corneum, tends to slough off too early. This makes the waterproof barrier too thin, and the kids tend to be very red. The water loss takes heat along with it, so you have both dehydration and temperature control issues. The loss of heat means that the affected person has to use more calories for maintaining body temperature, which leaves less available for growing. A lot of kids with NS have a feeding tube early on to compensate.

I don't think there's a specific book for you. FIRST has several "Care and Feeding of Ichthyosis" type books that talk about ichthyosis in general, genetics, and one for the schools, but aside from the individual information sheets here, I don't think there is anything printed.

On Facebook, there's a Netherton's group (Netherton Syndrome Reseach Group) as well as a few general ichthyosis groups, Friends of Ichthyosis and Ichthyosis Mommy Spot.

carlyfindlay.blogspot.com is an adult blogger with NS that you might like. And my blog is general ichthyosis, and it's linked below.

If you can, try to get to one of the regional conferences this summer (Dallas, NYC, San Jose Ca, Kansas City, Cincinnati), or even better, to the national conference next June in Indianapolis. And contact FIRST directly so they can put you in touch with your local regional people.