rare disease...mastocytosis in 6 y/o - Children's Health Message Board

jaamoo · 01-02-2004, 11:26 PM

My daughter was born with mastocytosis, and I was wondering if there are other parents out there whose children suffer from this disease?

I'd like to learn more about it, but everything on the net is based on what older people (and i mean 50-70 year old people) have experienced, and the info i got from her dermatologist is very complex and i have a hard time following her. I understand what it is and what happens, but it is still overwhelming at times as I am sure any disease is when children are involved.

Does anyone here know anyone who has this disease? Or know more about it? I'd love to talk to you!

ABC~Mom · 01-03-2004, 02:14 PM

i do not have a child with this but i did some of my own research for you and if you want info on this go to a good search engine and type this in "mastocytosis in young children" this is what i did and i got all kinds of info...i hope this helps and please keep me updated i want you to get the information that you need.

momof3mjt · 01-04-2004, 03:22 PM

I can't help you with that disease but I can tell you what I did when my daughter was diagnosed with epilepsy and the doctor we went to used BIG words. I called my own family doctor for a consultation. I had all of the reports sent to her so she could read up on them. Then I went and had her explain it all to me in ENGLISH! lol lol I know it can be very hard and scary when our children are diagnosed with things we know nothing about but you will learn. Believe me, in time you will become an expert in your child's disease!

good luck in your search.
Lindy