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- my dilema

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Hi everyone.

I just got off the phone with my 15 year old son's immunologist. He has been

off IVIG since July of 2000 due to terrible side effects that were seriously

compromising his quality of life. A decision was made to let try

without the IVIG for the first time in 9 years to see how he would do. We

tested and retested his levels and this is where we are at: His IGG is now

at 347. He has no pneumoncocal antibody at all any more, his T cells are

slightly below normal, white count 4.7. The problem is, we know that despite

various medication regimens, premedication, lengthening the IVIG time of

infusion, my son still gets very bad side effects. However, do we let him

get the pneumovax and try to go on without the IVIG or do we go back to

certain side effects that will keep him out of school a minumum of 1 week per

month? He hasn't had any life threatening illnesses lately, though we did

have an awful few weeks of ruptured ear drums, viruses, and usual run of the

mill sinus infections. I just don't know what to do. I am afraid of the

unknown, of him catching something really serious and becoming very ill, but

yet he is very depressed and sick all the time with the infusions. I just

don't know what to do.....

Tina

( 15, CVID, JRA, Asthma, and a really great kid)

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