Just completed IVIG

[lmkmip67]

My son, Ian, was a trooper. Not afraid of it at all. His largest concern was having to sit still for so long. lol He did great. He did get really grumpy. But we had let him watch the Bruins game the night before, plus we had to get up at 5 to drive to the Dr. Plus all the Bendadryl he was very tired. so far no side effects at all except the grumpies. I am keeping up on motrin and benadryl tonight. Dr. B said he could go to school tomorrow if he wanted to, so I will send him if he is feeling ok. No headache yet or nausea. But I will keep an eye on him. The nurses there were wonderful, and Dr. B is as well. I forgot to ask, does anyone know how long Dr. B recommends they keep taking antibiotics even after IVIG? I know we may go back for another treatment, or so, depending on how he does. Does he want them on preventative antibiotics for years? I think that was the only thing I forgot to ask, and felt if someone here knew maybe I didn't need to bother them with one question. All in all though, it was a lot easier than I thought it would be. Ian swam in the pool for 4 straight hours last night. So it went well. Now to see how he does.....

 

Thanks for all the support and advice!

 

Lisa

[SSS]

My son, Ian, was a trooper. Not afraid of it at all. His largest concern was having to sit still for so long. lol He did great. He did get really grumpy. But we had let him watch the Bruins game the night before, plus we had to get up at 5 to drive to the Dr. Plus all the Bendadryl he was very tired. so far no side effects at all except the grumpies. I am keeping up on motrin and benadryl tonight. Dr. B said he could go to school tomorrow if he wanted to, so I will send him if he is feeling ok. No headache yet or nausea. But I will keep an eye on him. The nurses there were wonderful, and Dr. B is as well. I forgot to ask, does anyone know how long Dr. B recommends they keep taking antibiotics even after IVIG? I know we may go back for another treatment, or so, depending on how he does. Does he want them on preventative antibiotics for years? I think that was the only thing I forgot to ask, and felt if someone here knew maybe I didn't need to bother them with one question. All in all though, it was a lot easier than I thought it would be. Ian swam in the pool for 4 straight hours last night. So it went well. Now to see how he does.....

 

Thanks for all the support and advice!

 

Lisa

 

 

Glad you got through it and are on the other side! It's a relief, isn't it?

I don't know what Dr. B recommends about the antibx., I kept my dd6 on her daily dose after the 1st time, because I sent her back to school, and this 2nd time, at 2 weeks post, I just went to 3x a week- it about halved her weekly dose (Azith.) but this 2nd time around I have pulled her out of school for the remaining 4 weeks of the year. I think it's important they don't get re-infected so soon after IVIG- but, you may want to get your Dr.'s input.

[lmkmip67]

Thanks! Does anyone else know how long Dr. B likes kids on antibiotics even after IVIG? Is this something they are on until they are an adult?

[sebrown1126]

I am very interested in this topic too. We are about 10 days post IVIG, and we've been doing 250mg of amoxicilin daily (he weighs 80 pounds). We have a month's worth, but the physician recommends this regimen for four to six months, then a once weekly zithro (500 mg) until he's 21.

 

This daily amox is causing a major yeast flare up. It is really masking the IVIG benefits and I'd really rather switch back to the weekly zithro.

 

How important are these antibiotics?

 

Thanks!

[Wilma Jenks]

I am really concerned about doing abx. after IVIG. She has reacted so wildly to the ones we tried. I wonder what happens if she can't take them?

[kimballot]

I am very interested in this topic too. We are about 10 days post IVIG, and we've been doing 250mg of amoxicilin daily (he weighs 80 pounds). We have a month's worth, but the physician recommends this regimen for four to six months, then a once weekly zithro (500 mg) until he's 21.

 

This daily amox is causing a major yeast flare up. It is really masking the IVIG benefits and I'd really rather switch back to the weekly zithro.

 

How important are these antibiotics?

 

Thanks!

 

 

Personally, I think antibiotics post -IVIG are a good idea, but I don't think it has to be amoxicillin. Amox is a great antibiotic, but many children have difficulty tolerating it. Perhaps you could ask for a different antibiotic now.

[momaine]

The length of duration of antibiotics will really depend on how your child does post ivig and then after eventually going off antibiotics.

 

For the next week following IVIG, really push the fluids into your son so that he doesn't get the headache that can result from IVIG. My dd has had 5 HDIVIG (#6 tomorrow and the next day)and the times she has the migraines is when we stopped being dilligent about how much she drank. We'd be careful for a few days then forget and she'd get a horrible headache on day 5 or 6 post ivig.

 

Good luck.

[lmkmip67]

Wow, we only gave Motrin and Benadryl for one day after. I haven't been watching how much he is drinking now (it has been 5 days now) and he has been perfectly fine. Grumpy, but no headache or nausea. I wonder if the IVIG isn't working then.....

[kimballot]

Wow, we only gave Motrin and Benadryl for one day after. I haven't been watching how much he is drinking now (it has been 5 days now) and he has been perfectly fine. Grumpy, but no headache or nausea. I wonder if the IVIG isn't working then.....

 

I don't think you have to have a headache for the IVIG o be working. My son has not had any headaches and I know the IVIG is "working" because he has chronic sinusitis and has not had any sinus symptoms since his first IVIG 10 weeks ago. We were really careful about fluids for several days after IVIG and I still push them as much as I can.