Those that have had numerous IVIGs

[lmkmip67]

I believe we are heading into numerous IVIGs with Ian. Going on our 3rd and I haven't seen enough improvement that I think will be done anytime soon. I know many have had 1, 2, or even 3 treatments. But I am wondering how many have had more, 6, 10, or more. How often has your child received the treatments and what kind of a response does your child see? How severe was your child, how many treatments and where are they now? Sorry for all the questions. Sometimes I use the search function and don't find a similar question, so I figure I will ask it, it may help others, too.

 

Lisa

[butterflymom]

=

Edited October 7, 2015 by tampicc

[philamom]

My dd(10) has had 7 IVIG treatments since June 2009. I will pm you later this evening to share our experience.

[momaine]

my dd is a complicated case, but she's had 7 high dose IVIG's to date and no end in near sight.

 

We started as classic SEVERE pandas case (but with no elevated titers) 1st ivig was miraculous 70% remission. 2nd one got her a little closer to baseline, maybe 80% even while dealing with a sinus infection. 3rd, not so much, another sinus infection. 4th no help...figured out the lyme/bart piece around that time. 5th was at the beginning of lyme treatment and we did not see any obvious benefits and in fact, much herxing. 6th we saw moderate improvement again. 7th after a rough week or two we've seen more improvement which seems to be slow and steady at this time. We are due again in less than a month.

 

I am feeling so hopeful at this point. Seeing my sweet normal daughter again for the better part of each day. she just got her first job working in a pizza/sandwich shop at a local store. I am SO excited to see her beginning to live a normal life again.

[melanie]

Were probably the winners with the most IVs on this site(if you can say winners).danny has had IVIG 1 gram per kilo for 1 1/2 years every 21 days.I lost count but Im sure its like 30 or more.Theres a definite difference in his behaviors and his tics.He has SPID and other dxs.He has verbal tics and I dont think they are ever going away at this point.Hes 17 and its not looking good.His motor tics are gone and he is much better than when he started.

 

 

Melanie