Vascular Birthmarks Foundation Forum - View Single Post - Klippel-Trenaunay - How important is diagnosis?
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Old 08-12-2005, 06:38 PM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: Klippel-Trenaunay - How important is diagnosis?

This is a tough one.

Finding the right pediatrician can be hard. I found a good one by ad on the clinic hold line. LOL And still wish that she would be more active in Ben's treatment. However, I tend to just take over the I can be intimidating too.

If you're not on the same page with your dermatologist, I would start searching for a second opinion. If they're sure about their diagnosis, they may not be any help to you in your pursuit of a specialist. I'd go with your "Mommy gut" here. The best doctors will say that the parent's gut feeling is one of the best gauges of how to proceed.

When I started contacting the specialists, I was a bit intimidated too. I just keep reminding myself that they're just people who happen to be really good at what they do. I think most clinics will just take an appointment, but sometimes having your GP make the introduction will move it along faster. I also depends on your insurance coverage. If you want the same benefits that you receive at home, you'll probably need to get a referral (and insurance approval) from a local doctor to have full coverage.

I've been trying to get a clear diagnosis for 2 years now, and hopefully we're just about to go over the hump and start seeing some action. For us it took numerous visits to many different specialty doctors; dermatologist, plastic surgeon, neurosurgeon, ENT, geneticist, neuroradiologist, and probably some others I can't remember. And, of course, the first one you see is usually NOT the one you'll continue with. In the end...after all this time...they finally agree with Mom. We need to go to a specialty clinic. Think of all the insurance money wasted? Well, not entirely. We've found the best near home, and will continue treatment here for as much of it as we can.

I've found that when it comes to specialty clinics that are far from home, they will have some sort of protocol for out of state patients. Very few can afford to fly across the country for an office visit. I know I can't...LOL. It's frustrating though, as it would be the easiest thing to do for answers. I've been looking at two vascular clinics myself, and I'm getting so tired of waiting that I'm ready to call in the families' air miles and just hop over there to talk to SOMEONE!!! (My own vent...oops.)

Good Luck!! I certainly don't write to discourage....just to let you know I feel your frustration.

Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
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