IVIG -- did your kids cooperate?

[Hayley]

As soon as we can get approval from our insurance company (I suppose I should say IF, not expect this a when though our doctors are optimistic due to DD7's CVID) we will be scheduling IVIG. She will be getting the high dose over two days. Even though she's doing pretty well in terms of her PANDAS symptoms right now, she hates doctors' offices and needles and I really do not see her cooperating with the whole endeavor. I'm more confident I can get her there willingly the first day, but am thinking getting her back for a second will be very challenging, especially if she has immediate side effects (e.g., headaches, etc.). Of coures we're prepared to just drag her in kicking and screaming, but obviously that's not idea! How did people manage this?

 

On the same topic, I'd love to hear about experiences with side effects from HD IVIG -- how bad were they, how long did they last, how quickly kids could return to school, etc.

 

Thanks in advance!!

[peglem]

We found this therapeutic play kit very, very helpful. My daughter IVIG'd every stuffed toy in the house. It helped to diminish her fear.

 

http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

[nicklemama]

I would be surprised if she had side effects after the first day. I don't think its common. DS was 7 when he had his first IVIG. He wasn't happy to have it but he managed. They did have to have a male nurse help hold him while the nurse inserted the IV. Once that was over, he was fine. He would not let them have his arm, so they had to hold his arm still. Side effects are common after the second day. My DS got sick about 18hrs after we left the hospital. If they get sick during the procedure, they are running the infusion too fast.

 

One boy, who was 12, started not feeling well the second day and Dr K slowed the drip way down.

 

DS had a bad headache, nausea and vomited a couple of times the next day, Sat. The day after that, he still had a headache. Was better on Mon and went back to school.

 

He's scheduled for IVIG #2 next week. He's not upset about it. He's nearly 9 now and knows this will help him get well.

[croatian mum]

Hi,

 

my ds 12 had IVIG 6 month ago.We were at the hospital; he was recieving the teraphy for 2 days - 12 hours a day.

DS had a very bad headache, nausea and vomited a couple of times and fever..but it was not so scary as I tought it would be. Ibuprufen helped him, so, it was not so bad.

All the side effect dissapierd when he was finished with the teraphy.The next day, everything was absolutly normal, he went out to play with friends after 2 days.

No side effects ever again.

Edited November 22, 2012 by croatian mum