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#12506 - 07/03/08 12:05 AM Re: Netherton Syndrome
westhillsmom Offline
Member

Registered: 06/23/08
Posts: 15
Loc: los angeles, CA
Becky, the aquaphor issue is another reason why I am inclined to change ped-derm. WHen I told my son's derm that I would like
to switch to the original formula aquaphor, he told me that he recommends nothing else but the healing ointment and that he knows of no other formulation besides that. End of discussion. I would really want to get my hands on that free aquaphor original if I could.

It is just so difficult to talk to our ped-derm. One of his minions (residents) would come in and talk to us, we can tell him what we need to say, he writes it down, goes out and briefs his boss,
The Derm then comes in, talks rather fast, sometimes he won't even pause to listen to what I have to say - then leaves the room leaving the resident to write the Rx and other instructions. Given that my baby would be seeing a pediatric derm possibly throughout his entire life, I just wish we have someone we trust and would work hand in hand with us.

Tammy, our immunologist prescribed Neocate and Ele-Care to supplement Nate's feeding. The problem is, he wouldn't take the bottle. Two days ago though, he started taking the formula in plain glass (must make him feel like a big guy!). It pleases me that he takes about 4 ounces of formula a day (in addition to breastmilk). He doesn't like the taste of Neocate though. I tried it myself and its terrible [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Wendy, we've ordered Robathol. Thank you for the recommendation. We have yet to use it though, it just arrived today. I also ordered Free & Clear bath. We've been using nothing but Cethaphil on him.

Question. How do you deal with the scaly scalp? Before the diagnosis, I used to use Derma-Smoothe on Nate. Now I only use baby oil. I just pick on his scalp most of the time [img]http://www.ichthyosis.com/ubb/smile.gif[/img]



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my baby is one in a million.
_________________________
Nate, 15 months. Diagnosed with Netherton Syndrome.

www.nethertonsyndrome.blogspot.com

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#12507 - 07/03/08 12:55 AM Re: Netherton Syndrome
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Karen
Many of us just returned from the national ichthyosis conference in Chicago so hopefully more will post. As for your question on pediatric ichthyosis doctors on the west coast,I consider Dr. Mary Williams at the Univ. of California, San Francisco Dermotology Dept. to be the best informed about your child`s type of ichthyosis. Also you can contact Jean Pickford or Moureen Wenik at our foundation at info@scalyskin.org to become a part of our Ichthyosis Support Network to put you in touch with mothers of netherton children. If you would like to chat, my email is lesthan@aol.com. Take care Karen.
Sincerely,
Les
_________________________
Les Avakian

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#12508 - 07/03/08 03:01 PM Re: Netherton Syndrome
wbreen Offline
Member

Registered: 01/14/08
Posts: 32
Loc: Dorr, MI, USA
Karen,
As for the scalp, that is an un-ending battle! I can say that Tyler's scalp is easier to handle now than it was when he was an infant. Our routine is when he wakes up in the morning is rub baby oil in his scalp. We then have breakfast, plays a little, while I get his bath ready. In the bath, I first pour the water on his scalp to get it moistened. Then I use Cetaphil wash on his scalp and massage it in. I let it sit on his head (sometimes I put a warm wet washcloth on his scalp to help keep it moist, but that all depends on if he keeps it on!). So once I'm all done washing his body and face, I'll take a wash cloth (one that is a little rough) and with circular motions, gently rub off the scales. He's usually pretty good for it, for a little while at least [img]http://www.ichthyosis.com/ubb/wink.gif[/img] I also use a fine toothed comb to help bring up more of the skin. He does not like that, but it really works well. At night, I will also lube his scalp up with the original Aquaphor ointment.

I also recommend you contacting Dr. Williams. I met her at the conference, and she is VERY knowlegeable about Nethertons!

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#12509 - 07/03/08 07:29 PM Re: Netherton Syndrome
texlex99_dup1 Offline
Member

Registered: 09/28/06
Posts: 128
Loc: Brooklyn Park, MN USA
Karen, I agree with wbreen, contact Dr. Williams, it is so very important to find a doctor that is going to listen to you.

I also agree with how wbreen does the scalp issue, after talking with my mom, she said that during our bath, she would put a warm washcloth on our heads and just let it sit for as long as we would leave it there, and keep rewarming it during the bath. And then using the fine toothed comb. She said that it is much easier to do it everyday, and it keeps the scale under control. I still put aquaphor on my head at night also.

Becky

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#23429 - 12/09/08 03:42 AM Re: Netherton Syndrome [Re: texlex99_dup1]
westhillsmom Offline
Member

Registered: 06/23/08
Posts: 15
Loc: los angeles, CA
Hi Becky and wBreen, this is quite a bit delayed, but who is dr. Williams, what's her full name and what hospital in what state is she affiliated with? thank you both!

Karen
_________________________
Nate, 15 months. Diagnosed with Netherton Syndrome.

www.nethertonsyndrome.blogspot.com

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#28011 - 11/02/11 01:13 AM Re: Netherton Syndrome [Re: westhillsmom]
Rhythm_N8 Offline
New member

Registered: 11/02/11
Posts: 2
Well this is sort of strange but there is at least one male here and his name is also Nate. I'm not sure if I can be any help but if you're still around feel free to say hi and ask anything you want.

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