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#6378 - 11/28/06 02:03 PM Re: feeling sad
AdamsMom Offline
Member

Registered: 05/29/02
Posts: 26
Loc: Alpharetta, Georgia, USA
he has it all over - knees, elbows, etc... but particularly on palms and soles. Did you go to the conference this summer? who do you see as a derm here?

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#6379 - 11/28/06 04:16 PM Re: feeling sad
babygirlbeach Offline
Member

Registered: 05/12/05
Posts: 61
Loc: Georgia, United States
We see Dr. Spraker at Emory Dermatology. We go every 6 months but really no change. What types of lotion do you guys use?

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#6380 - 11/28/06 06:39 PM Re: feeling sad
Ellamay Offline
Member

Registered: 10/23/06
Posts: 34
Loc: Bagshot, Surrey, England, Uk
We use Epaderm all over our daughters skin it is thick and waxy does not rub off and does not come off with water it is brilliant. Not sure if you can get it in the States but its ingredients are Liquid paraffin, Emulsifying wax (containing cetostearyl Alcohol & sodium lauryl sulphate) and yellow soft paraffin you may be able to get something similar it is much much better than 50/50 (liquid and soft white paraffin) as that rubs off easily.

Good luck and keep up the good work

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#6381 - 11/28/06 07:15 PM Re: feeling sad
debbie upton Offline
Junior Member

Registered: 09/24/06
Posts: 2
Loc: hertford, englandunied kingdo...
Dear Babygirlbeach, I hope you are feeling a bit better now. I know how you feel - as parents of children with any condition, we too have a special need. I tell my son that sometimes when I am fussing and he understands it. My son is 13 and also copes unbelievably well with his 'dry skin'. It hasn't been easy but it has been far easier than I thought it would be as I sat with him in special care on the day of his birth and imagined his entire life and how difficult it was going to be. I am a teacher and I see children being nasty to each other - it is part of growing up and we need to accept it as that. My son has been called names from time to time but it does not affect him. He shrugs it off, but it is more difficult for us as parents to do that because we imagine our children's pain and it is usually far worse than reality. When my son was about 3 we were watching a cartoon together - there was a dragon in acage and it was crying. I said to my son something like - oh poor dragon. My son said 'why are you sad, your'e not that dragon'. That has really stayed with me and if I ever had any advice to give a parent of a child with any serious condition I would say this: remember that it is your child that has the condition and not you.
I also comfort myself with the fact that I have always done the best I can. Take care!

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