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#26211 - 04/17/10 04:29 AM Searching for a Pediatric Derm.
MonkeyMama Offline
Member

Registered: 04/17/10
Posts: 44
Loc: Georgia
Hi all.

My daughter Cate is 2 and the doctors have yet to determine what type of Ichthyosis she has, thought we know she has some symptoms of LI and some of IV.

We live in Atlanta, an amazing hotbed of pediatric healthcare, but my husband and I have not been happy with the selection of pediatric dermatologists here. We've been to two (both at Emory) but would like to find someone who is an Ichthyosis specialist.

We are 100% open to traveling to find this specialist, but don't know where to look. Does anyone on the board have take their child to a specialist that you'd recommend?

{And yes, I understand everyone's post is their own opinion and you are not recommending a specific doctor or treatment plan. You will simply be sharing with me what doctor has worked for you. ;)}

Thanks in advance!
Sam
_________________________
Sam
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis

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#26213 - 04/17/10 01:42 PM Re: Searching for a Pediatric Derm. [Re: MonkeyMama]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
I love my son's pediatric derm. Her name is Anita Haggstrom. She works at Riley's Children's Hospital in Indianapolis, Indiana. She worked with an Ichthyosis specialist for 8 years before she started her practice. She has been more than helpful in getting genetic testing and in trying to find what works the best for Kenny as far as creams. Kenny is only 11 months old so we have not been going to her for that long but everything we have experienced so far has been great!
Good luck!
_________________________
My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#26214 - 04/17/10 02:48 PM Re: Searching for a Pediatric Derm. [Re: cschaap]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
We saw a Pediatric Derm at UAB Children's Hospital in Birmingham so it wouldn't be but about what an 1.5 hour trip for you guys? Her name is Amy Theos, another mom on the board has also taken her child to see her. She doesn't have the best bedside manner but she is extremely smart and sees lots of this! She specializes in genetic skin disorders. It wasn't tough at all to get in with her, the waiting room there is fantastic as are the rooms! I hope this helps!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#26215 - 04/17/10 04:41 PM Re: Searching for a Pediatric Derm. [Re: MomofPrincesses]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
2 ways to find someone: You can contact FIRST and they will put you in contact with one of their known dermatologists in the area. FIRST is at www.scalyskin.org and their phone number is 215-619-0670

The other way is to email someone that lives there. I know one of the board members lives in Alpharetta. The mom posts here occasionally as Adamsmom. Her email is in her profile if you search for her. I am pretty sure they have found someone knowledgeable and competent in the area.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#26320 - 05/07/10 02:36 AM Re: Searching for a Pediatric Derm. [Re: MonkeyMama]
Wiggy Offline
New member

Registered: 05/07/10
Posts: 1
Dr. Mary Spraker at Emory is awesome. She is very involved in the reseach of all forms of ichthyosis. My son and I have Epidermolytic hyperkratosis.

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#26333 - 05/09/10 05:06 PM Re: Searching for a Pediatric Derm. [Re: Wiggy]
kekonen Offline
Member

Registered: 12/14/09
Posts: 58
We see Dr. Theos in Birmingham, AL too. I agree with Kati. Our 2nd visit was much better than the first, and she is very knowledgeable!
_________________________
Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

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#26339 - 05/09/10 08:44 PM Re: Searching for a Pediatric Derm. [Re: Wiggy]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Originally Posted By: Wiggy
Dr. Mary Spraker at Emory is awesome. She is very involved in the reseach of all forms of ichthyosis. My son and I have Epidermolytic hyperkratosis.


We may have to try her, Dr Theos no long takes our type of insurance so it would be worth driving to Atlanta to see her! Make a weekend of it!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#26387 - 05/24/10 03:00 AM Re: Searching for a Pediatric Derm. [Re: Wiggy]
MonkeyMama Offline
Member

Registered: 04/17/10
Posts: 44
Loc: Georgia
Originally Posted By: Wiggy
Dr. Mary Spraker at Emory is awesome. She is very involved in the reseach of all forms of ichthyosis. My son and I have Epidermolytic hyperkratosis.


We saw Dr. Spraker in the the beginning, but were moved to Dr. Leslie Lawley (same office) after Dr. Spraker was hospitalized last year.

Do you ever feel like you're just going through the motions at your appointments, or do you feel like something gets accomplished when you go?

Are you located in Atlanta? We live in Cumming.


Edited by MonkeyMama (05/24/10 03:00 AM)
_________________________
Sam
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis

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#26388 - 05/24/10 09:22 PM Re: Searching for a Pediatric Derm. [Re: MonkeyMama]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I've generally found the appointments to be pretty useless. There's nothing they can do for us except renew prescriptions or try new ones. I suppose it would be more meaningful if we were coping with skin infections or something.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#26390 - 05/25/10 02:26 AM Re: Searching for a Pediatric Derm. [Re: Hearsay]
MonkeyMama Offline
Member

Registered: 04/17/10
Posts: 44
Loc: Georgia
It's nice to hear that you have the same feelings, Jennifer. It's so frustrating to spend over 2 hours going to appointments every 3 months and walking out with NOTHING.

I guess that's just the nature of the beast, though. Bummer.
_________________________
Sam
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis

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