Anyone else have a child with Histiocytosis?

[mel]

My 7 month old daughter Has JXG, and i was wondering if anyone else has a child with histio?
it's so fustrating to go to a doctor and they cant give you any answers.. dont know why she got it, cant do anything to treat it etc. never even heard of it before she was diag with it luckily for us she is otherwise healthy as its only on her skin, but shes covered in lesions. we are told it should go away on its own in a few years time so we just have to wait and see. sometimes i feel a bit guilty for getting upset about it because chances of it turning nasty are slim (i have more chance of winning the lottery) and if she had to have any form of histio then the kind she has is the best one to get becasue really its just cosmetic, the other kinds are like cancer. but i just want to know if its really as rare as the dr tells me?

[TurnedBatty]

How strange I log in and see this post! Perfect timing:) I have a now 8 year old who was diagnosed with jxg at 3 months, the first at westmead in ten years apparently. It mainly involved his eye, so he had ocular involvement, and only had a few spots on his skin come up over the years. His eye bled numerous times, and he is now blind in that eye with a vision of 3/72, I think, will have to check the records.

[mel]

Hi, thanks for the reply :p are you in sydney? we are in qld and although the only dermatoligist we've seen knew what it was before we had the biopsy, i'd love for her to see a dr who has actually dealt with a number of cases before. i know there are some in syd... could be some in qld too for all i know, but i ve been in touch with a specialist in the U.S and he had some names in sydney.
we had an eye test and she is all clear but has to have a test every 6 months to keep checking and we had xrays and scans and blood tests to rule out systemic involvement and leukemia. that was fun.... lucky for us all tests were clear. so shes just lumpy. she has a couple of quite large lesions on her legs and smaller ones on her face, arms head, pretty much everywhere, so we get some looks when we go out. most people think she has a bad case of the chicken pox.. :) she has around 60 lesions all up and the last derm app was told yes they look the same book back in in 6 months and we'll see how they look then.... that'll be $165 thanks. anyway shouldnt complain because she is otherwise a happy healthy bub. hope your son is doing well

[TurnedBatty]

Hi, sorry for the late reply, havent been back on to check :)

Yes we are in Sydney, but the doctor who dealt with DS was an eye specialist, I don't know of any JXG specialists. Mostly JXG has to do with bloods etc, it comes from the histiocytosis family so maybe look for a blood specialist of some sort?
MY DS only ever had a few on his skin, I can imagine how scary it must be if they all come up quickly!
There is a facebook group you can join that is filled with other JXG kids, a lot from America, but many from all over the world. http://www.facebook.com/groups/107738122581732/ I hope that link works. :)

[mel]

Hi,

yes im a member of a few fb pages, just thought id see if i could find some more people closer to home :) lots of families in the U.S some in Aust, but they are all a great help to get on there and talk to other people who had been through it all and then some..

[TurnedBatty]

I know of one other person in Australia, who I found here on bubhub:) I am in contact with her on Facebook too. It has certainly helped having someone go through the same things.

[Chubear]

out probably doesn't help, but it can be common in some breeds of dog. maybe a vet can help with some extra information?