immune deficient - new protocol?

[Hayley]

My DD7 (almost 8) had HD IVIG (2g/k over two days) back in early December and recovered beautifully. By about late January she hit a point where we considered her 100% herself 98% of the time. She got strep in May and got through that pretty unscathed then again in late July and this time, she has had some backsliding. Nothing remotely like what we had experienced last summer at onset, but definitely something a bit off (just in time to start school... UGH!). I'd say on a scale of 1-10 in terms of symptoms if she was a 10 at her worst she's still only maybe a 1 or 2 now, but we can see she's not herself.

 

She had some bloodwork several weeks ago and we see that her IgG levels are very low (total 409; subclass 1, 253, subclass 2, 105. At their lowest documented last september she had total igg of just 392). The doctor is suggesting doing 1g/k ivig pretty immediately then monthly ivig at .5/k to keep her immune system up through the school year.

 

We trust our doctor implicitly, but are nervous because she's been SO good for the past six months and she's not awful now, we hate to rock the boat. Of course we also don't want her to get worse.

 

I would be interested in feedback from others who have done this or similar protocol.

 

Thanks so much!

Hayley

[bigmighty]

Can you check w/one of the known pandas experts and get an opinion? Maybe a call or email consultation? DS has low overall IgG. We were advised by Dr. B's PA that going on low dose IVIG would probably end DS's PANDAS remission. DS' IgG is in the high 500s, and we have not treated out of concern about the possibility of relapse. Since your DD's IgG is lower, it's definitely worth considering treatment. But it would be good to know if there's really a down-side. Hoping someone with more direct experience will weigh in here.

[Hayley]

bigmighty, Our doctor who recommended this is Dr. L so she definitely knows her stuff. Just curious how others had done with it. Thanks.

[Hrosenkrantz]

bigmighty -- how would a lowdose ivig end the remission? Confused..

[bigmighty]

No idea. The PA At Dr. B's office told me on conference call about a year ago that the experience in their practice was that low dose IVIG would cause a relapse in PANDAS kids not experiencing symptoms. Since DS's CVID was deemed not bad enough to treat, I never explored the comment further. Glad you are w/Dr. L. Perhaps she can put in a call to Dr. B's office or send him an e-mail to inquire as to whether he has thoughts on that?