Anyone Near Chattanooga TN

Posted by: momdoc284

Anyone Near Chattanooga TN - 10/31/10 02:51 AM

I am in Chattanooga TN and wondering what Ped. Derm you have used and what your experience was like. The last one I tried said Ichthyosis? Oh that's just a fancy name for dry skin. Ok, so as I scrap the scales off my body its just regular old dry skin... 1st and last visit.
I need someone good for pediatrics as I have a 10month old and 3 year old both with skin issues. The 10 month old does not sleep for more than an hour or two at a time because of the itching. I could really use some suggestions and a good derm!
Thanks for your help!
Desperate for sleep!
Posted by: Hearsay

Re: Anyone Near Chattanooga TN - 10/31/10 04:28 PM

Hello there!

Your best bet for finding a local experienced doctor is to call the charity and talk to one of the ladies there for a referral.

Website is firstskinfoundation.org, phone number is 215-997-9400. They have a list of knowledgeable doctors and should be able to direct you to someone within a 2-3 hour radius. Generally, your best bet will be the nearest medical school or research hospital, or the nearest children's hospital. But even within those confines, there's usually maybe one or two doctors that has any experience with ichthyosis.
Posted by: momdoc284

Re: Anyone Near Chattanooga TN - 11/01/10 09:54 PM

I called them... The closest they could recommend was Nashville TN or Atlanta, GA. Based on the comments about the GA doctor (useless visits every 3 months) I just don't know what to do with him.
Posted by: Hearsay

Re: Anyone Near Chattanooga TN - 11/02/10 01:56 AM

Generally you'll find that the doctors aren't much use beyond the initial diagnosis and renewing prescription creams once you find something that works, and it really doesn't matter what type you have. We have seen some very knowledgeable people and that's true even with them. The majority of your needs are in day to day care, and there's very little a doctor can do for you on a once a month, season or year basis once you get the routine established.

Don't stress too much about it. Visit your local expert once every year or two so that if something comes up you're in their system and can get in quickly.
Posted by: momdoc284

Re: Anyone Near Chattanooga TN - 11/02/10 02:13 AM

Would you say that it is not worth it to drive for a specialist? We do have a ped derm close to the house but they are not listed with F.I.R.S.T.
Posted by: Hearsay

Re: Anyone Near Chattanooga TN - 11/02/10 12:31 PM

It really depends on how you're doing with your derm and what you need. If you need a specialist - in our case, we have one of the rarest types out there and it took all of the board members and researchers about 3 years to even figure out what type we have and we just got our gene identified a few weeks ago (my son is almost 8 and my husband is 35!) - then it is worth seeing one.

Some people deal with persistent MRSA infections. Others go through phases where the skin molts off, then is fairly clear for a while, then gets really itchy and miserable, etc. Many of our members deal with collodion membranes on their infants. Most of these things mean a visit to the specialist. Most dermatologists have no idea what to make of us and the visits end up being an exercise in frustration.

Conversations I've had:
"Wow, I've never seen this before. Thanks for coming in. Can you tell me about it?" - $100 copay, please.

Go in for one of the kids. Similar conversation to the above. Then "Hey, is that a mole on you, unaffected mom? I can take that off!"

And the best one - remember, it's all boys affected in my family: "Isn't that x-linked?" *sigh* No, x-linked passes from the mom to the sons, not from the affected dad.

So, if your ped. derm isn't clueless, and is willing to learn and help you, stick with him. Most of us go see the specialist once or twice early on, then use the local person for the day to day needs. Driving 4 hours to see the doctor is a lot to ask for a routine visit. Most of the doctors on the FIRST list see several ichthyosis patients and have a passing familiarity with the rare types. Many are researchers, too. There are other doctors out there that aren't on the list but have familiarity, especially with the more common types (xli and vulgaris).
Posted by: kekonen

Re: Anyone Near Chattanooga TN - 11/17/10 08:35 PM

Not sure how far away you are from Birmingham, Alabama, but we have a great pediatric derm for Annalie. Her name is Amy Theos. We had been seeing her every 3 months up until Annalie turned 15 months. Now we go every 6 months.
Posted by: Rustina

Re: Anyone Near Chattanooga TN - 11/21/10 03:48 AM

We are in South Carolina and were suprised that no one could help us in Charleston. After several visits we were referred to the Dermatology department at the University of North Carolina (not incredibly far from TN). We made one trip and they gave us so much information. The doctor had other doctors under him studying the condition and they are accessible the way a nurse would be in another office. They work through my ped here and I have not had to travel back. Anything I need, I call them and a doctor calls me back within 48 hours. I have been very impressed.