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[Guest guest]

I joined this group thinking it was supposed to be for support. I have

posted a few times and gotten no reply. I realize that my kids aren't

as sick as some of the others, but none the less, do have similar things.

We have had difficulties with stuff their whole lives, and it has been

frustrating trying to get the Dr's here in GA to listen to our

concerns. No one would test them, even after me asking them to, for

any kind of immune deficiency. I have asked them a few times over the

years and they never would. So once we got our diagnosis last month,

and I found this group, I thought it would be a good release. And then

when I never get any replies, it is just discouraging. Like I said, I

know my kids aren't as sick as some of your kids are, but they do have

a PID, and it is all new and scary for us still. It seems that not

many people in GA even know about this, and we are the first in our

school to have this. I am having to walk the school system through

everything and school them about it all. My kids have missed a lot of

school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to

get 504's.

If you guys don't think I need to be a part of your group, then I

understand, but can you direct me to another board? I do need a

support group where I can vent and talk and learn about this stuff. I

have questions and concerns and fears like everyone else with a new

diagnosis does. Through all of our stuff, tracheomalacia, heart

murmur, reflux, recurrent croup that is now asthma, recurrent ear

infections, etc I have had to learn about stuff and cope, and I just

need a place where I can find some support.