5 weeks post 2nd IVIG update

[lmkmip67]

Ian is 5 weeks post 2nd IVIG. We saw some improvement after the first, about 6 weeks out. The second one did cause some symptoms to flare, like Dr. B said. But he said it would be less and not as long. 5 weeks out we are still getting occasional tics this time (they disappeared last time) OCD symptoms, fears and defiance, tantrums, etc. We were on vacation last week and he got a bad case of poison ivy. He is on a 7 days dose of steroids to control that. So not sure if some of it now is roid rage, or what. The occasional tic is still there, though not constant. I thought we might see more improvement sooner this time, but 5 weeks out and still about the same as the previous 3 or 4 weeks. And really not a lot better than he was before the 1st one. We did testing for Lyme and all of that as Dr. B suggested. All was negative (he even looked the results over again last time we were there). Kind of just feeling a little let down at this point. I hoped to see MORE improvement, I guess... but we are going back for IVIG 3 in 3 weeks.

 

Lisa

[SSS]

Hang in there---sending you PV's and good thoughts--- after IVIG is so hard, the waiting, watching.

[kimballot]

Lisa - thank you for updating us. How long has it been since your son't first HDIVIG?

[lmkmip67]

Lisa - thank you for updating us. How long has it been since your son't first HDIVIG?

 

It has been 8 weeks between IVIG's. So almost 14 weeks since the first one. We are going back in two weeks. So about 6 weeks since the 2nd and 14 weeks since the 1st.

[kimballot]

I don't know if it helps, but we started seeing positive changes around the 3rd IVIG (all wer 8 weeks apart). It has now been nearly 6 months since my son's first IVIG and he is doing very well. Not perfect - still have lots of work to do, but definitely on the right track, and at least I am hopeful that we can move forward (if we can keep him healthy!)

[lmkmip67]

I don't know if it helps, but we started seeing positive changes around the 3rd IVIG (all wer 8 weeks apart). It has now been nearly 6 months since my son's first IVIG and he is doing very well. Not perfect - still have lots of work to do, but definitely on the right track, and at least I am hopeful that we can move forward (if we can keep him healthy!)

 

That does help, thank you! I expected a couple more treatments anyway, at least. I just hoped to see something, you know? But one treatment at a time, I keep journaling and trying to stay positive. He isn't TERRIBLE. He is a normal little boy with a lot of OCD issues (mostly fears and separation, wiping isn't to bad anymore, and he doesn't get too into germs and that type of thing, more repeating and rituals), the occasional vocal tic, and defiance. I could almost handle most everything else if he just wasn't so darn argumentative all the time. lol

[kimballot]

Have you done any cognitive behavioral therapy yet? I think we are at a point where we have achieved what we can from IVIG - we will continue to prevent illness and exacerbations, but we are now moving to more CBT to work with what we have. If we can keep him healthy, we will have a stable baseline and can move forward.

[Mary M]

We were told by our PANDAS doc that the benefits of IVIg #2 would appear sooner than #1 as well and our experience did not reflect that at all. Our dd has had a longer period between IVIgs. It is a long daunting time table toward healing.

Mary

from Michigan