Breakthrough Colds Sinus Issues Etc LONG

[Guest guest]

Our son 5yo, is IGA deficient and IGG subclass 2 and 3 deficient. The

Immunologist also believes that he isn't making a " memory " to most

things when he gets sick. His post vaccinations titers responded

borderline to tetanus and pneumonia, but she feels pretty strongly that

his constant sickness and inability to get over anything w/out several

rounds of antibiotics mean he's only responding selectively. I'm not

sure if she can prove this but she's said her goal is to get him better

and not turn him into a pin cushion because no matter what she labels

him as the treatment is the same. So she's put him on IVIG/SCIG, it's

been a month, first the IV then switching to SC the last three Fridays;

today will be our 4th SCIG.

has had runny noses, crusty nose, mild cough, and red lips for

the last 2-3 years. I can't remember the last time his nose wasn't

running, it's just the levels of how bad or how much drainage to the

throat, etc. After his IVIG just before Christmas, the runny nose was

gone, the cough gone, the red lips from sore and licking gone. Amazing,

unbelievable, we were shocked and totally hopeful this would change our

lives. has been on antibiotics at times 3 months straight for

infections and that doesn't count his prophylactic one. After meeting

with the Immunologist last Tuesday her plan now is that if things go

well she start working to take him off some of his meds...our overall

goal.

Anyway, last Friday afternoon he started with a clear runny nose, I was

heartbroken. The good just can't last. It went to lots or runny and

nose blowing all weekend. Monday it turned thick and the cough started.

So as Tuesday was worse I called the Immunologist, increased inhalers,

sinus spray, and added antibiotic so he doesn't go to fever and more

serious infection. But then till I got it filled, the runny nose was

running less and the cough started subsiding with the inhalers. So we

waited on the antibiotic thinking he may handle this one on his own. Dr

called yesterday to see how he was doing and I told her we waited on the

antibiotic, she was OK with that, but wanted us to start it if things

got worse or didn't clear.

This morning he was feeling a little warm, no real fever, but very nasty

attitude and still had some pretty thick stuff, so I broke down and

mixed the antibiotic and he started it.

So now that you've read my novel, what is your experience with getting

sick while still on SCIG or IVIG? What can I expect? I don't want to

be too hopeful, but also don't want to give antibiotics all the time

either. Any words of wisdom?

Thanks,

Michele w/2 in PA