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#13755 - 04/15/07 11:37 PM Re: baby scratching / itching
momof3 Offline

Registered: 04/12/07
Posts: 209
Hi again,

Dane took a DNA test for NS, but tested negative. We were told that not all of the mutations have been found yet for this syndrome, so there's still @20% chance he has it. I haven't spoken to anyone yet who hasn't tested positive for it who has it, but Dane has so many similarities to NS, that dermatologists can't really match him to any other form of ichthyosis. One of his early skin biopsies just mentioned psoriaform changes of the skin, and mentioned multiple forms of dermatitis, but it was rather inconclusive. This may not be true for diagnosing IV.

The medications I mentioned for itching were prescription medications (not over the counter), so maybe what you're using is a similar product. You might ask your doctor about broader spectrum antihistamines if your son has hayfever type allergies as well.

I wish you the best of luck with your son. Don't lose hope for finding a diagnosis. A skin biopsy may be more telling for IV than for what we're looking for.
Take care.

Originally posted by Conor:
Hi SJ, thanks for your advice.
I am puzzled by one thing in your message. You note that your child is undiagnosed. We have had only visual diagnosis from our dermatologist and are hanging all our hopes on a biopsy to be performed to confirm if he has IV or not. Have you had this done & if so, is it an inconclusive test ?
Also the products you note don't seem to be available in Ireland, we use Oilatum for his baths, a 10% Urea cream called Ureadin, & soft paraffin gel. We also are currently wet-wrapping Jack twice a day as per derm's orders. None of the above seems to do a lot for the itch. We also give him a liquid antihistamine called IVallergan but only if the itching gets really bad.
Best of luck with your fella.

#13756 - 04/16/07 09:51 AM Re: baby scratching / itching
victoria Offline

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
Hi Connor,
My 2 year old son Kian has x linked ichthyosis, he was visually diagnosed as having ichthyosis vulgaris until I kind of made a self diagnosis on him from information and pictures of the internet and asked for a more conclusive test to be done - with which x linked came back.

Night times are always the worse for itching for them and when Kian was younger he hardly used to sleep at night and would scratch himself raw given the chance ! - I am pretty useless for suggestions how to stop it completely because its something I personally never suceeded on with him BUT you could try a bath and creaming straight before bed along with the wet wrapping.

The creams I am using for Kian at the moment chop and change a lot but we always use eucerin or oilatum plus for his bath and capasal or eucerin dry scalp relief shampoo with 5% urea for shampoo.
On top of those we use diprobase and a whole host of other eucerin products during the day.

All that so far seems to have stopped him itching at night and he is also sleeping - its been a long 2 years ROFL !!! but he is so worth it [img][/img] I wont say this is down to the creams he is having though as I honestly dont know if it is that or age....

#13757 - 04/23/07 07:21 AM Re: baby scratching / itching
Leandra Offline

Registered: 09/06/05
Posts: 95
Loc: Colorado Springs, CO, USA
Our 21-month-old Natalie is quite itchy all day long with heightened problems at night. The best relief we have found for her has been AmLactin AP followed by Aquaphor Healing just before bed as well as a dose of either Benadryl or Atarax ("super-Benadryl"). I always keep her nails clipped (about every 4-5 days) and put her in a Carters microfleece 100% cotton zipper at night which tends to seal in the moisture well. She is still able to reach in through the back of the neck down to the upper back and scratch the dickens out of herself, however. She also tends to sleep better without as much scratching when we keep the room a bit cooler (around around 70 the scratching is consistently more pronounced. She also fares better when the humidity in her room is at least 45% to 50%. Here in Colorado that is not easy to achieve, however.

During the day we use a prescribed compound of 10% Urea in Aquaphor (a pharmacist at Dermal Therapy told me that urea helps with itch) to keep her as moist as possible. I really don't like using Aquaphor other than morning and before bed because it gets grease in her hair and clothes, but I can't seem to find anything else with the staying power to keep her moist enough without almost constant lotions. We have also used Mimyx cream as well as Sarna-P with limited results. Every so often we'll break out the hydrocortisone 1%, but I don't like using steroids on her for any length of time. We have recently started trying Verdeso foam .05% corticosteroid but haven't been using it long enough to be able to tell if she's getting any relief from it.

As for the night baths, Natalie does seem to go down much more comfortably; however, she dries out so much faster and needs a re-application of Aquaphor an hour or so later if she is to avoid waking up really itchy. If we do night baths, we also do a morning bath as well because Natalie just looks and feels so much better during the day when she's had a more recent bath.

I know that a lot of folks on the board have spoken very well of sea salt or dead sea salt in the baths (didn't seem to do much for us except that it does make the water nice and soft) as well as Aveeno Oatmeal baths and other Aveeno products that help with itching. We can't use these as Natalie seems to be allergic to topical oatmeal. Might be worth a try for your sweetie, though! :-)

Mom to three gorgeous princesses all affected with significant medical challenges, one of whom has CIE.

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