Doing IVIG Soon

[Pezmom]

We are doing IVIG for our seven year old son as soon as we can get it set-up. We got the best Christmas present possible when we heard it will be covered at least partially by insurance. Our DAN! doctor is going to follow Dr. K's protocol. My questions have to do with helping to prepare our 7 year old son.

 

He does best when he's prepared for new experiences. He's had several IV's in the past, but nothing that will last as long as the IVIG. For those of you who have done IVIG, what experiences did your child have during and after the procedure? Any negative reactions? I'm looking for any and all info I can use in a social story for our guy.

 

Also, since we are doing this with a doc who has experience with IVIG, but at much lower doses than this, any other info on how Dr. K and his staff administered it would be helpful as well. We did our phone consult with Dr. K in October and he said he would be happy to coordinate with our doc. I emailed his office and put him in touch with our doc, but thought you guys might be faster and have more info for me.

 

Thanks so much for your help.

 

(Diana - can you believe we got insurance coverage?? I'm still pinching myself.

 

Jena

[Worried_Dad]

Hi, Jena:

 

Our son (12) had IVIG with Dr. K in Chicago in early October. He was in the midst of an awful symptom exacerbation, so his OCD contamination fears made the logistics of the trip (hotel, etc.) very challenging. But overall, he did pretty well with the procedure. He was mostly bored and tired by the end (could not sit or lay down due to contamination fears, so he stood the whole time - 6-7 hours for 2 days in a row). We read and watched movies on a portable DVD player to pass the time.

 

He had pretty serious nausea and headache both nights after the procedure, but he did not throw up or have a major fever. (Some kids do, I'm told.) Day 2 was easier than Day 1 since he "knew the drill" by that point. If your son's phobic about needles, then the IV insertion may cause some anxiety, but the nurses did a very good job in our case and minimized the discomfort.

 

Our son was so miserable before IVIG that the hope of feeling better got him through the procedure, despite high anxiety levels. We just kept telling him "we have to do this so you can get well and get your life back," and that motivated him to overcome his fears. We didn't want to over-promise... but we were all so desperate for some hope that we probably did.

 

Anyway, we did see rapid improvement for the first 3 weeks, and that encouraged our son. Hopefully your son will enjoy the same progress post-IVIG! (Since he's younger, he actually should progress faster.)

 

I hope everything goes smoothly for you, and that the insurance company doesn't hassle you! We were also "pre-approved" for the procedure after we furnished the doctor, the surgical center, and all procedure codes ahead of time. Still had to pay up-front... and now after 3 months, we haven't seen a penny of reimbursement or been given a reason as to why our "pre-approved procedure" is not being covered. I hate our healthcare system!!!

 

 

We are doing IVIG for our seven year old son as soon as we can get it set-up. We got the best Christmas present possible when we heard it will be covered at least partially by insurance. Our DAN! doctor is going to follow Dr. K's protocol. My questions have to do with helping to prepare our 7 year old son.

 

He does best when he's prepared for new experiences. He's had several IV's in the past, but nothing that will last as long as the IVIG. For those of you who have done IVIG, what experiences did your child have during and after the procedure? Any negative reactions? I'm looking for any and all info I can use in a social story for our guy.

 

Also, since we are doing this with a doc who has experience with IVIG, but at much lower doses than this, any other info on how Dr. K and his staff administered it would be helpful as well. We did our phone consult with Dr. K in October and he said he would be happy to coordinate with our doc. I emailed his office and put him in touch with our doc, but thought you guys might be faster and have more info for me.

 

Thanks so much for your help.

 

(Diana - can you believe we got insurance coverage?? I'm still pinching myself.

 

Jena

[amy s]

We are doing IVIG for our seven year old son as soon as we can get it set-up. We got the best Christmas present possible when we heard it will be covered at least partially by insurance. Our DAN! doctor is going to follow Dr. K's protocol. My questions have to do with helping to prepare our 7 year old son.

 

He does best when he's prepared for new experiences. He's had several IV's in the past, but nothing that will last as long as the IVIG. For those of you who have done IVIG, what experiences did your child have during and after the procedure? Any negative reactions? I'm looking for any and all info I can use in a social story for our guy.

 

Also, since we are doing this with a doc who has experience with IVIG, but at much lower doses than this, any other info on how Dr. K and his staff administered it would be helpful as well. We did our phone consult with Dr. K in October and he said he would be happy to coordinate with our doc. I emailed his office and put him in touch with our doc, but thought you guys might be faster and have more info for me.

 

Thanks so much for your help.

 

(Diana - can you believe we got insurance coverage?? I'm still pinching myself.

 

Jena

 

 

Good luck Jena! I'm happy that you were able to set things up. As far as when my dd got ivig, we had a very bad day with severe raging when they had to put the iv in, though she'd had IV's in the past, she was just very ill this time. They almost sent her to another hospital but we had a wonderful doctor who pushed for us to just do it there. Our doctor also did my dd's ivig working with Dr. K's protocol. We thought we almost would not get it done, though. We knew she would do that (rage), because up to that point she was raging about almost anything and it would last 3, 4, 5 hours at a time with max assist of 'keeping her safe', you could say. As far as during the procedure, she had no complications... just a few different times of mild rages in which we were just desperately trying to keep the IV in. She had no rashes. She did not mention any headaches and had no nausea or vomiting. She did get very constipated straight away though, which was a complete opposite for her because she'd had loose stools for MONTHS prior to the IVIg and she also had some fatigue which I believe started when she got the IVIg and it hung around for several weeks. Otherwise all was good. I don't regret a thing except I wish we could have gotten it done sooner.