[tri-med] skin conditions

----- Original Message ----- 
From: "Mark & Jayne Wright" <jm.wright@xxxxxxxxxxx>

Laurie wrote:
> {Brianna's is Ectodermal Dysplasia........her skin  on
> the knee's and elbow's just keeps building up. It does not exfoliate 
> itself. }

Jayne wrote:
> I'm wondering if that is what Nicholas has on the tops of some of his 
>  >toes.  It's exactly like that!  Someone described it like skin on an 
>  >elephant.  Weird!

Since early toddlerhood Alex has had eczema. It would flare up now and then 
and a prescription cream would work.

Alex has also been diagnosed with allergies and with allergy induced asthma.
The is most like a correlation to the eczema and allergies.

A year or so ago Alex's hands REALLY and I do mean severely flared up with 
eczema. Cracking, bleeding, build-up of scabby, tough, hard skin.
We are still battling it. I finally took him to a dermatologist and when all 
his tricks weren't working they started him on the UV-B light therapy.

It got better, then they backed the 2 per week treatment to once per week 
and they flared up again. Now Alex is back on the 2 per week therapy and 
they are clearing up again. This is in addition to a prescription cream 
application 2 times per day and a prescription ointment application at 
night.

The dermo told us that this is NOT like putting the hands in sun. I'm 
guessing that's true because I had Alex 'soaking' his hands in the sun 
trying to clear it up before we gave in and went to the dermo. Maybe I need 
to investigate what the 'B' part of the therapy is......

Alex also has the finger and toe nails of concrete. It's very difficult to 
cut the things. And his finger nails are very ridged (not rigid but have 
raised bumpy area like the sand from waves in the water) but not so much the 
toes.

Michelle mom to Alex (19, partial trisomy 14 mosaic) and Molly (16)
MichiganUSA 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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