Re: Kim re: Chris - continued

[Guest guest]

From 4 months until 17 months was sick. Constantly. If he was not

on antibiotics, he had a chest or an ear infection if not both. It started

at 4 months when he was hospitalized for a day with bronchiolitus. We went

through the encephalitus, had all kinds of IV antibiotics until they

determined that it was the HSV1 virus, then we had the Acyclovir. He had a

PICC line so that I could finish the 21 day round at home. I think he was

still on another antibiotic. I just remember that 2 days after we were

done with all of the meds, he got a fever and had yet another ear

infection. I just sat down and bawled. They had given him his first dose

of IVIG in the hospital as soon as they knew he had no IgG. He had a

really bad reaction - turned an odd shade of lavendar and his temperature

went way up. Luckily the immunologist was in the room when it happened.

He said that it was a flogistic (spelling?) reaction. Apparently there

were some changes occurring on a cellular level. They turned off the IV,

waited an hour, then turned it back on and kept it at an extremely low

rate. He never had another reaction like that again. In fact, it was

close to 3 years before he had another reaction. Then he had a reaction of

chills and fever, so they started premedicating him with Tylenol and

Benedryl. (The doctor said that that reaction was probably due to the

presence of an infection somewhere in his body. As soon as his body got

enough of a boost to fight it, it responded with a fever.) I suspect that

is exactly what was going on, because the reactions seemed to start

occurring when the chronic sinus infection cropped up.

It took a while for the IVIG treatments to really take hold. The doctor

recommended that I extend my breastfeeding until they did take hold. Month

by month there would be more and more time between 's ear or chest

infections. He didn't really have any problems with his sinuses for a

couple of years. We finally got to the point that he only had to take

antibiotics about once every 2 or 3 months as opposed to 10 days (at least)

out of every single month. He has always received IVIG once every 4 weeks.

He was on 5g for most of that time, then about 10 months ago they

increased it to 7.5g, then about 5 months ago when he actually got to see

an immunologist again, the doc increased it again to 15g. It was at that

time that he put him on the daily antibiotics due to the chronic nasal

infection. We'd gone round after round of antibiotics, it would seem to

get rid of it, then it would crop right back up 3-4 weeks later. The doc

said enough is enough, let's get rid of this thing for good.

has a very normal life other than the treatment, meds and watching

what he drinks (by the way - soda fountains use the regular municipal water

supply to mix with their syrup and carbonation. We try to avoid them and

get him canned drinks instead.) I also found out (not too long after we'd

been camping and swimming at a lake) that he shouldn't be swimming in

lakes. They also don't recommend that he play in the indoor children

playground that have all of the tunnels and such, though we do go to Chuck

E Cheese on his treatment day. I figure he needs something to look forward

to during his treatment, and that is when he would be the most resistant to

any little buggies that might be hanging around the tunnels anyway. He

attends an early learning center 5 days a week - 2 whole days (so he can

eat lunch with his friends) and 3 half days (because I still like him to be

at home with the baby and me sometimes). The treatment seems to have kept

him healthy even in the public situation. The teachers know to watch to

make sure he doesn't share drinks or food with the other kids. Of course,

I think that he did pick up more colds when he was younger. He didn't

attend as many days or as long a day, but the younger they are, the more

they seem to get their fingers into everybody else's mouths.

One kind of odd thing about his sinus infections is that he never seemed to

have a snotty or runny nose. The only way we would know that there was an

infection going on would be that he coughed so much (from the drainage

going down his throat) and the nosebleeds. I've always thought that was a

little odd, because other kids on the list with low IgA need sinus washes

to keep their little noses from getting all junked up. And my baby,

Christi, is constantly getting some little cold and snotting up ever since

she had RSV last spring. (She's the only one that has ever gotten a

snotty, runny nose of all 3 of my kids.)

So I guess that is a really long way of saying, yes Sam was on IVIG every 4

weeks since he was diagnosed at 17 months. He continued getting sick

initially, but it steadily diminished until the only problem was the

chronic sinus infection that cropped up a couple of years later and was so

difficult to get over. Today he is amazingly healthy and gets over viruses

faster than the rest of us. I sometimes wonder if that might be because of

the immunities he receives from the IVIG. Since there are hundreds of

donors involved in making enough for one treatment, he is getting a wider

variety of antibodies.

Let me know if you have any more questions. I'm not a particularly private

person, especially when my experiences might be of some benefit to someone

else, so don't be shy about asking.

God bless you,

Wenoka

At 02:34 PM 03/29/2002 -0500, you wrote:

>snip>

>You say your son has been healthy since the antibiotics 5 months ago. What

>happened during the time he was 17 months and now? Was he on IVIG the whole

>time. Did he still get sick through the IVIG? Are his T-cells affected?

>If so, in what way? I don't mean to bombard you, it's just that I haven't

>seen too many people with XLHIM.

>

>I don't mean to ramble. I would love to hear a little more if you wouldn't

>mind.

>

>Thanks again.

>

>Kim, Mom to Nick, and

>knmb2@...