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.
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.