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).
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"