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#23819 - 02/08/09 08:04 PM Looking for Dermatologist in Los Angeles
westhillsmom Offline
Member

Registered: 06/23/08
Posts: 15
Loc: los angeles, CA
Hi everyone,

I am looking for a pediatrics-derm for my 15month old son with Netherton Syndrome in Los Angeles area. Any recommendation will be appreciated.

Also, any Netherton Syndrome patients or Mommies with NS children around LA area, I would very much want to get in touch. Thank you.

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

www.nethertonsyndrome.blogspot.com

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#23821 - 02/09/09 06:53 AM Re: Looking for Dermatologist in Los Angeles [Re: westhillsmom]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Can you travel to Loma Linda? TJ has a Derm. Called Dr. Linda Golkar,

She's the best in the area. She's got an office near LLUMC (the hospital) Lemme get there tomorrow and find her contact info for you.

It may be a drive, however if you need a doctor with experience with different forms of ICH. then she's the woman to see!

Cindie
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#23837 - 02/11/09 06:44 PM Re: Looking for Dermatologist in Los Angeles [Re: Cindie]
westhillsmom Offline
Member

Registered: 06/23/08
Posts: 15
Loc: los angeles, CA
Hi Cindie, Thanks for the suggestion. However, we finally got an appointment with Childrens Hospital here in LA, so we'll see how that goes. He's currently being seen at UCLA but like I've been telling to anyone who would listen, we are getting frustrated by their lack of genuine care for my Nate. They are very difficult to reach on the phone, rarely returns my calls. We continue to go there because his other doctors are there too (Immunologists, GI doctor, Eye doctor, Nutritionist, Urologist) and we wanted to have a centralized health records.

What finally did it for me though was last week when we were at UCLA to see his Immunologist and my Natey's head/scalp was weeping with sticky, icky liquid and although we've seen that happen before, wasn't as bad as that day. The Immunologist suggested we go 'Upstairs" to show the Dermatologists but they refused to see us because we didn't have an appointment. We went out to the cafeteria to wait for our next appointment and we saw his main Dermatologist (the clinical director of dermatology) walking back to the hospital. we walked with him and asked if he had a second to look at Nate's head.

The good doctor never stopped walking, never slowed down and just told us to wash his head with water/bleach solution. He didn't even know what it was because he didn't take a moment to look!! And to think that they "used" my baby a couple of times as clinical subject at a couple of grand rounds!

I told my husband, that's it for me. I want somebody who has genuine concern for Nate and not somebody who just treats him a as some sick patient.

Thank you for letting me gripe here. And thank you for the referrals.

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

www.nethertonsyndrome.blogspot.com

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