Anyone with Cutaneous Vasculitis?

[Piglet&Pooh&5DD]

My DD(8) has had a horrible rash since Valentine's Day 2005. After months of blood tests, chest x-rays, skin biopsies, and five doctors, they have now named her rash:cutaneous vasculitis. We know what it is, but no ones what is causing it! Has anyone had this or know someone who has ? We are so upset and worried. The doctor has told us that it could be affecting her insides and major organs but not to worry at this point because she looks healthy.?? What? They want her to have blood testing done every month, just to make sure that she stays healthy. We are looking now at some more doctors to take her to, but with her being so young and hating all the testing, we are sooo unsure of ourselves. Anyone with any info, please let me know. Anything would be more than appreciated.Thanks!!

 

[The Mystery Machine]

As a mom that has an endocrinologist, neurologist, & cardiologist for their girls, the best thing you can do is to find the specialist that "gets it".
It should be #1 on your priority list.

The major reason is that if this thing suddenly worsens then you will be up a creek. Do it while time is on your side.

A doctor is out there that can help you. You have to find him/her.

I read the background of this disease and I would seek someone who specializes in this disease. Possibly St. Judes? I would definetly keep at it & scour the ends of the earth.

{{{HUGS}}} and I hope you find that person to help you.

 

[Piglet&Pooh&5DD]

Thanks for the reply. Unfortunately, none of her doctors "get it". They feel that we just need to wait and see, something that we do not want to do. Hopefully we will find someone soon. Thanks again for the "hug"! It does help.

 

[Poohnatic]

I've got it, too. For a while, my rash looked like a giant mickey head on my leg, but it's got a triple chin now.

I hope you get the answers you need. Mine is a direct result of the vascular disease and valve problems I have in my leg. Other than steroidal creams, there really isn't anything that can be done with mine.

Suzanne

 

[Piglet&Pooh&5DD]

I've got it, too. For a while, my rash looked like a giant mickey head on my leg, but it's got a triple chin now.

I hope you get the answers you need. Mine is a direct result of the vascular disease and valve problems I have in my leg. Other than steroidal creams, there really isn't anything that can be done with mine.

Suzanne

Suzanne,

What kind of doctor did you have to see for your diagnosis? We have seen her family doctor(Ped), allergist, and dermatologist. The rash starts at her feet and ends at the top of her chest, nothing on her face.

 

[Mom2Em]

I do not have it but I know what it is like not being able to get a open/shut diagnosis and cause... I would not stop trying to find someone... Make sure that she is tested for Lupus and other auto-immune disorders...

 

[Poohnatic]

Wow, hers is all over? The dermatologist gave me the definitive diagnosis. The vascular practice was unsure if it was that or something else, so they sent me to the dermatologist. In my situation, going to a teaching hospital is a very good thing-I'm learning stuff about my vascular disease that the surgeon in Maryland never bothered to tell me.

I use clobetasol on it and if I don't do this twice a week, it flares up pretty bad. However, mine is a 5 inch thing on my leg, not the whole body. Your daughter is probably one big, giant itchy mess. Hugs to her, I know it's not fun.

Suzanne

 

[Poohnatic]

Mom2Em, interesting that you should bring up the Lupus link. I don't have it, but some of the chronic issues I have are common in lupus patients.

Suzanne