IVIG - really worth it?

[searching_for_help]

We personally didn't have any luck with the extremely costly IVIG for our dd with PANDAS/PANS. I've read several cases of kids getting sick months after IVIG and ending up in the same or worse place as before IVIG.

 

My question - is IVIG rather hyped on here - has anyone seen any lasting affect without having to do another one? Are the success stories all coming from what Dr. K is telling people, or are people actually seeing success (WITHOUT more IVIG treatments.)

 

Thanks.

[rowingmom]

We didn't have access to IVIG so didn't use it. But here's my 2 cents worth:

 

IVIG will be helpful for PANS/PANDAS symptoms if there is no ongoing infection. If the infection has been delt with (either by the immune system or abx treatment) and there are no remaining bacteria to elicit further antibody production, IVIG will help mitigate autoimmune symptoms.

 

If infection remains (and this doesn't necessarily have to be strep, but can be other bacteria that haven't been tested for or even considered) IVIG will produce short term results only.

 

Just 2 cents.

[sf_mom]

I agree with Rowing Mom. Our children had multiple chronic infections and viruses. IVIG helped our older son but six months post his last treatment I could tell it would not provide complete resolution of symptoms that we were hoping for him. He was starting to regress with blood in his stool and why we needed to look beyond just strep as the culprit.

 

We are in our 4th year of treatment (last IVIG treatment was January 2010) and older DS's only remaining symptom is regular headaches and think that has to do with heavy metal chelation. We have found IV nutrients to be as helpful as IVIG and is a lot less expensive. He now gets hd Vitamin C weekly (strong anti-oxidant) and will provide other nutrients via IV. This particular child does have immune deficiencies of both his IgGs and IgAs. We will continue to treat him until heavy metals are resolved and nagalase normalizes. If your child is deficient in amino acids they will have difficulty making IgGs and why these particular immune deficiencies can occur and why we choose to boost him with vitamins/minerals over IVIG. Additionally, it is 'believed' if the Nagalase is elevated the immune system will have a difficult time rectifying itself. Treating his elevated Nagalase with GcMAF is under consideration also over IVIG. However, I have learned never to take any form of treatment off the table and will reconsider IVIG if we can not sustain recovery as hoped.

Edited November 13, 2013 by SF Mom

[LNN]

I think it depends on who you ask and how long ago they had IVIG. There's a group who swears IVIG is the single most valuable treatment they've ever done. Some say this for the first few weeks/months and then don't sing its praises quite as strongly later. Some remain stedfast in their praise. A few even achieve years worth of recovery with only one IVIG.

 

Then there are some who've had mixed results. And there are a few, like me, who only saw bad and then a slow return to baseline, with no gains. But then, my DS had undiagnosed lyme at the time and perhaps the silver lining was that IVIG made his immune system strong enough to actually create lyme antibodies and enable us to get a diagnosis. (so maybe it was worth it despite the ugliness at the time).

 

I do believe there are a few stories of complete success with only one, but I personally feel they're the exception, not the rule. I can see how it's valuable for some kids. But I do not see it as a cure. I see it as a tool and not the right tool for every situation. JMO.

[searching_for_help]

Thank you all so much for your input. My husband is gung ho to "try" another one, due to the healthcare changes here in U.S. He's afraid that we won't have access to these types of treatments. I understand his concern - and I wonder how or if our kids will get the treatment they need under the new plan (no one seems to know much...), but the experience we've had is that it's nearly impossible to get anyone to look seriously at PANDAS and be willing to test for infections, even now. We've finally found a NP willing to do some testing, but there are so many things that could be causing the problems, the list is daunting, and the testing is expensive and so very time consuming. But, I really don't want to throw another $15,000 plus gas, food and motel at something that wasn't effective the first time. Ugh.

 

So very glad to have all of you to bounce concerns off of. I'd be lost without this forum.

[pr40]

NIH did PANDAS IVIG study, results should be out soon and they will answer your question. You can e-mail Yale Child Study Center who was the co-organizer and ask them.

I asked about a year ago and back then I heard that on average IVIG results were encouraging. Then, just last month I heard that they were not all that good but that was second hand from someone who didn't want to believe in IVIG. If you find anything from the NIH study, please post it here.

[qannie47]

How long ago was the IVIG? I heard that at the most recent Pandas conference, ALL doctors were touting the effectiveness of IVIG and were on the same page. I do think that there has been a lot of confusion about what one can expect from IVIG. We did it 5 months ago, and my ds did great, went to 150% pretty much immediately. What I did not realize at the time is that it is NOT an instant cure. Maybe for some, caught extremely early, (within 6 mo. of first major episode), but for most, All doctors agree that IVIG takes a year or two to truly do it's thing. While the magic is happening, expect to experience episodes that are supposed to gradually over time be less in intense and shorter in duration. ABX would still be needed to move child through episode as well. My ds, had an episode somewhere around the 13 or 14th week after IVIG. I freaked. I wondered what the point of IVIG was. It was not until I learned that I am going to have to expect this and came to terms that IVIG is more of a "Big Picture" cure, not an instant one. My ds, after a 3 weeks episode is back to normal and healing again. So I am grateful. One other thing that came out of the conference is that it is important to treat Pandas in some way, whether it be IVIG, or abx. I heard they said that as long as the child is treated in some way, ALL children can/will eventually recover. That being said, it could take years. I hope this helps. I vote for the IVIG.

[nicklemama]

We've done it twice and I'd say it was worth it but it not a cure. Most of the doctors use IVIG as part of their treatment plan but it's not a first line treatment. That's what they all said. One of them, either Latimer or Dr Jolan Walters said you get diminishing returns on each subsequent IVIG after the first. We've followed that pattern. It also takes a long time to see full effects, as in a year, if your child does not re-exacerbate. I've seen that too.

[BostonDad]

Long time reader first time poster. Let me say Thank You for all the information I have gathered from you all.

I must agree with Nicklemama. We have done IVIG twice the first one showed unbelievable results. It brought our kid back to almost 90%. Eight months later she had the second one. It helped greatly but not with the same results but definitely beneficial results. So yes its worth it in my opinion.

[Debbie1]

We have done multiple ivigs and never experienced diminishing returns. We have seen great results with all of them.

[searching_for_help]

Thank you all. It's been a year for us and we have not seen the IVIG make any difference at all - it's amazing how each child reacts so differently to treatment. Our daughter is older and had PANS/PANDAS longer - maybe that makes a difference. At this point I think we'll just keep testing to try and find what we're missing. After no response to the first IVIG, I don't think we'll see any improvement with a second.

 

Once again, I thank you all for your input.

[mdmom]

searchingforhelp....

 

How old is your daughter?

[qannie47]

Does anybody have an opinion as the why so many people experience diminished results on consecutive IVIGS?

[searching_for_help]

mdmom - our daughter is 21. She wasn't diagnosed with PANDAS until about a year and a half ago - her multitudes of docs/therapists couldn't see past her eating disorder, although she had other symptoms of PANDAS/PANS, so she has suffered with this for a long time. (Fourth grade - with quirky things happening even before that - but 4th grade was when life changed for all of us.) I'm really thinking a lot of kids with "eating disorders" are actually PANS, but the ED therapists aren't trained for anything but their specialty, from what we've experienced. And it doesn't help that these kids are embarrassed about some of the OCD, and aren't honest with the professionals about it. Sadly, her psychiatrist didn't get it either, but was willing to order bloodwork when I finally learned about PANDAS. Sadly, I know of a person in our community that has recently sent her young child to her with overnight behavior changes, and she has not told them of PANDAS, but instead writes them a script for an SSRI. Go figure...

[PowPow]

Searching for help,

Has your tried steroids?