can i join here :)

**bossoflatch** · 20-12-2007 19:55

my name is leisa and my 10mth old dd has mastocytosis..

feeling very overwhelmed at the moment as to the lack of information on peadiatric mastocytosis.. with regards to systemic involment ..

she has severe reactions to all food - via the throat and gut.. she has allergic rhinitus /conjuctivitus, gerd , multiple food allergies/ intolerance and undx bowel issues which they seem to connect back to the masto coz of the reaction of the mast cells in the gi tract .. she has only recently started with skin lesions .(lucky for us as this lead to the dx of mastocytosis FINALLY )

joined a few masto sites but no one seems to frequent there.. so very lost with my self

looking forward to chattting some with you all !

**LivinOnAPrayer** · 20-12-2007 20:41

Hi leisa! Come to our chat thread...

Can you explain all the mastocytosis and other big word stuff to me

We're ALWAYS on our thread (sad, i know hahaha) so come along and join our special mummy's circle!

**Nowhere** · 20-12-2007 21:26

hey there leisa told you you would be welcome in the sn chats lol

hope you had a good day

**bossoflatch** · 20-12-2007 21:52

thanks gusy .. i dont know how anyone copes ..there is so much info on the web.. and when a specialist tells you to go google it as they dont know too much rofl.. funny ..

masto is a mast cell reaction in the body ..

here

more here

more again

they are talking about doing a bone marrow biopsy when we get to melbourne.. ( we are relocating to get her into some great docs there

) as atm ..she appears to have gi tract involvement which would bena that she has systemic mastocytosis..

info on systemic masto

atm .. we are looking for infants with systemic masto .. very hard to find as its quite rare.. we dont quite know how this will turn out so going crazy trying to find a child with this.. if ykwim

ill be sure to pop into the chat soon enough .. thanks

**Loopy Linda** · 21-12-2007 00:53

good luck, i know how supporting and comforting it is when you find out someone else is the same, and maybe they are a little further along the road and can help and talk to you along the way. i felt the same way as my son has a problem in his brain and i didn't know of anyone with same thing. through this section i found a mum who, while not the same problem at first they suspected this and for me it was comforting as she was close, in a way, IYKWIM.

keep searching, i am sure somewhere you will find someone who can help and who has been there!

Linda

**Loopy Linda** · 21-12-2007 01:01

sorry you may have already found this site, but it is a group and it has links to other support groups. only thing is i think it is in england. If you haven't already joined i would say go for it. i recently joined an american group and on my first night i received more than 40 emails...might be good for you

http://www.mastokids.org/index.php

**naiwen** · 21-12-2007 07:01

Hello Bossoflatch,
Please come and join our special needs chat thread. You are more than welcome!
Just wanted to say as well I have seen how much you have helped people in the reflux threads (along with Amy and one or two others) and thankyou for doing it.

**ReecesMum** · 21-12-2007 07:44

Hey,

Sorry to here your daughter suffers these problems.I can't say i understand exactly what it is but from all that info i get sort of an idea about it.Your always welcome to join our little chat thread,even though we may not be able to relate on some issues all of us ladies in there are a great support network even just for everyday discussions.Like Lexi said we are always there most of the time.LOL!Hope you get some great doctors in melbourne and help with these health issues of hers.

Good luck.......