IVIG - Does it work? We're headed that way after con with Dr K

[HT's Mom]

If IVIG is as effective as Dr. K claims, why are more parents not going that route (aside from the huge cost issue.)?

 

 

I think all of the stories of successful IVIG listed here are great! It's encouraging to hear that for the families (like us) who have not gone that route - yet.

 

But I thought I'd answer this question - for us, our decision not to pursue IVIG is not as much of a cost issue at this point, as much as it is I don't think my son is ready for that yet. Antibiotics alone has gotten us 85% back to baseline, and we're doing therpay to help with the residual OCD that is hampering our complete recovery. Our biggest problem has been exposure and re-infection. My son reacts very severely to exposure so that has slowed our progress.

 

The reason I say we're 85% is because even after the exacerbation subsides on the abx (usually a couple of months) we're left with OCD behaviors still - our therapist, pediatrician and other dr's all agree that some of this is due to my son's age - he's only 3, and was dx at 26 months (after 6+ months of thinking we had some REALLY terrible twos!!). In kids this young, the OCD becomes "learned" behavior, rituals and preferences that were compulsions before, are now just the "normal" way of doing things - that's how it's always been. So we've started to see a differenct between the actual exacerbation and the residual OCD. I think if our son was older, we might not see as much residual OCD, and it is getting better as he gets older. Also, alot of the OCD we see in our son is somewhat age appropriate for him (things developmentally normal 3 year olds might do) - just to an extreme.

 

I'm not sure I want to put my son through IVIG just yet - he's so little and young, and from what I understand, the side effects are not fun, and there's usually a "turning of the pages" where things get worse before they get better. If what we think about the residual OCD is correct, the abx may be getting him closer to 95-100% than we realize, and we want to give the therapy time to work (which it is).

 

IVIG isn't off the table for us, it's just not something we are pushing for at the moment. Our son's most recent strep infection was in mid-February (he's still working through his 90 day supply of abx), and this one was milder than the last, and the intensity of it passed much quicker than the previous 4 infections he's had.

 

I just thought I'd give you some insight as to why at least one family isn't going there - even with the success it seems to show.

 

Thanks for the story - I'm glad he is doing well and hope that continues for him I guess what worries me about this whole IVIG or not issue is something Dr, K says. If I understood him correctly, he believes based on his many experiences with PANDAS cases that these kids will generally never get back to 100% without it. We specifically asked him if ds would grow out of it , and his answer was no, he'd just learn to deal with/hide/handle episodes better. And that may still be the case,I guess, after IVIG if he is reinfected. But I got the distict impression that the younger the better as far as curing the kids, and so it made me sad we hadn't known this before and done it at 5 and 11. I have no idea if Dr. K is right and of course there are many other treating physicians who may feel differently. But doesn't even Dr. Swedo and the NIMH info not really recommend abx as the a treatment? All the anecdotal evidence that they work wonders notwithstanding, it seems they are trying to cynically show that IVIG works, right?

 

Don't misunderstand me - I totally get that 3 years old is very little and if you are seeing great results without going there, terrific. I guess I'm just saying keep it in mind over the coming years, which of course you are already. Jeez, even as I type I'm totally confused - I have no right ot be giving others advice!! Anyway, thank you for your input and good luck to your little guy.

Edited April 13, 2011 by HT's Mom

[pathfinder]

My ds 17 did his IVIGs when he just turned 17 which was 8months ago. I don't think IVIG was cure for my son but it gave my son a chance to be cured.

My son has had pandas/pit for last 8years and I put him through a lot of treatments that simply did not work( probiotics--worse, GFCF for 6months---no change, supplements---nothing, medications--unreliable, unpredictable, sometimes better sometime worse, same baseline, I could go on)

After IVIG, OCD and rages are less and short. His baseline has changed ( from 70% to 90%??) and I could see what he could have been without pandas more and more. But I think we can attain 100% because I am seeing that something in his system that was blocking all biomed/homeopathy intervention has lifted and he is responding to GF diet and has shown interactions with probiotics ( for the first time I see which is bad probiotics for him and which is good. I took my son to see a Lyme doctor to see if he has room for further improvement on different antibiotic. I see all the possibilities that was not there before IVIG. If I could go back in time, I would do IVIG at this first sign of OCD . IVIG really was hepful to my son.

[SarahJane]

@JAG10: K switched my son to Biaxin...he'll be on it for 4 weeks (we're in our 3rd week now). Originally, he'd done just 2 weeks' worth & we were to do a steroid burst the 2nd week if no improvement after first week. Then, my hubby got a positive IgG result on a myco p test. They weren't going to treat it (said was just showing a past infection), but I called & got him 10 days of Biaxin. We held off doing a steroid burst for son for now. Will talk to K after hubby's course is done to see what our next step will be. We're seeing good results...not great. But I'll take good for now. We were about ready to pack up the car & travel the 8 hours for another IVIg prior to switching abx. It wasn't as bad as the worst we've seen, but it seemed to be heading that direction. Whew.