new to the group and needing a crash course

[Guest guest]

My name's , and I have 2 boys (3 and 6 years) who will be starting IVIG

very soon. I'm trying to understand all of this, but I'm having a hard time

processing everything I read. Originally, we were told the boys were pretty

much fine. They had low IgA levels, but they responded pretty well to Bactrim

and Omnicef. They made antibodies to the pneumococcal vaccine, and we were told

not to worry about the minor infections and just go about our life as normal.

Then this fall, they both started getting sick and not getting better. Nothing

terribly serious: ear infections, strep throat, lots of colds, sinus infections

and so on. But then, my younger son developed a fever in December that still

hasn't gone away. It's not very high, rarely over 101, but nothing has been

able to make it go away. We redid their labs in January and found that they no

longer had antibodies to the pneumococcal booster they got a year earlier, and

that their IgA levels were still low.

My boys have autism, and have not reacted well to vaccines. My younger son has

had significant regressions following vaccinations, and my husband and I were

not willing to try giving the boys a second booster to something that wasn't

seeming to " stick " so to speak. The doctors all agreed that we should give the

boys more time, and said if things didn't get better, we might want to consider

IVIG. It sounded like we had all the time in the world, and that things would

probably blow over without needing IVIG. Well, within a week of that phone

call, the boys both spiked high fevers, started new sinus infections, and then a

few days later eye infections. Now we're being told we've exhausted all of our

antibiotic options, and that we need to start IVIG now.

I'm overwhelmed, and don't understand this very well. I'm not even sure what

their actual diagnosis is. I've heard specific antibody deficiency, low IgA,

and another term I don't even remember. I'm not sure how to prepare the kids

for the expereince or what I should be looking out for in the way of side

effects. They are verbal, but can't always tell me when they're hurting, and my

older one often has paradoxical reactions to medications.

I would appreciate any info on what I should be asking, or tips to make things

go easier. Does it seem like I'm missing anything important or that the doctors

are jumping ahead to IVIG too quickly? I hate not being able to wrap my head

around this. It's hard to make decisions without knowing what the heck I'm

doing.

Any help would be greatly appreciated. Thanks!