local support groups

[moomin]

my 17 year old daughter has just been diagnosis with hypogammaglobulinaemia which has taken 2 years and 3 hospital later to find out. I would like to know if there any support groups and also more infomation. her IgG, IgA and IgMs are way low. where has this come from? will it go? will it get worse? what can I do to help her, as she is so low at the mo. she missed her last year at school and GCSEs and her first year of college. I'm so worried about her. many thanks

[burkov]

Hey there, i'm sad to hear for another parent with a sick child.
How are thing going now, is your daughter ok now?
We have also some sort of Hypogammaglobulinemia, but my girl was diagnosed just two months after she was born.
She had severe infections.

How was your daughters health till now?
I can tell you, that this is a condition for you as parent and she as a PID kid, can get used to. It's hard i know, but believe me, if you get your treatment right, it wont be that difficult.

Did she started IVIG?

Hope to hear some good news from you.

[kelton]

i am going through the same thing, diagnosed myself and my one year old at the same time. i am devistated beyond words, and worried sick for my baby, i cannot imagine him going through a lifetime of this at such a young age, i am afraid he will not have a normal childhood or life. i have been crying nonstop. i am 42 and can look back at the last 20 years of strange symptoms that went undiagnosed for so long until i developed autoimmune problems, and this came up. i had him tested because of my history and he has it too! i cannt imagine giving IVIG treatments to a toddler, how is this even possible!

[burkov]

Well, we started with subcut when she was around the 9 month.
It is waaay better that way. Easier for the kid and easier for you.
We were doing it in the hospital the first two months, so the docs were sure we are doing it right.
Its not hard, although i still shake a little after every treatment.

What test did you do to be sure about the hypogammaglobulinemia.