IVIG study results

[pr40]

here is the study

http://online.liebertpub.com/doi/pdf/10.1089/cap.2014.0067

 

I cannot believe these results. they are 100% positive. all kids seem to be SYMPTOM FREE.

[jan251]

Thanks for posting this; there are only 12 patients described. Note that several of them had multiple treatments with IVIg. I wonder whether immune parameters were measured.

 

Here's an interesting study discussing possible modes of action of IVIg generally (not about PANDAS):

 

Induction of Regulatory T Cells by Intravenous Immunoglobulin: A Bridge between Adaptive and Innate Immunity

Edited November 9, 2015 by jan251

[pr40]

hi jan251 -- if you have a specific question, i would e-mail study authors. please, post their response if you do contact them.

[bigmighty]

It doesn't actually say that all of these kids remained symptom free. I only skimmed, but one shows a kid who kept getting strep with re-emergence of symptoms each time (patient E). After IVIG, at every new strep infection the ocd returned and the child went on on a treatment dose of augmentin for up to a month. It looks like the kid was on prophylactic antibiotics, too but was getting new strep infections/symptom re-emergence anyway. That's not to say that the IVIGs weren't beneficial or positive. But I wouldn't call this 100% symptom free since the child obviously still has PANDAS and continues to become symptomatic sporadically even while continuing on daily antibiotics.

[bigmighty]

Just curious - does anyone know: Were these case studies taken from Dr. K's practice, or were they compiled from multiple physicians?

[qannie47]

Thanks Pr! I was most amazed at the similarities of the cases to my ds. He is still doing great, btw...the new diet and supplements really seem to have helped. My thoughts are that his past "popcorn" flares most likely were the result of the inflammation caused by his digestive issues. Hence, I think for my ds, Pandas and his digestive issues had a very cause/effect relationship.....So I will never know if the 2nd IVIG was needed, but at this point, I don't really need to know as long as he is healthy.

[pr40]

It doesn't actually say that all of these kids remained symptom free. I only skimmed, but one shows a kid who kept getting strep with re-emergence of symptoms each time (patient E). After IVIG, at every new strep infection the ocd returned and the child went on on a treatment dose of augmentin for up to a month. It looks like the kid was on prophylactic antibiotics, too but was getting new strep infections/symptom re-emergence anyway. That's not to say that the IVIGs weren't beneficial or positive. But I wouldn't call this 100% symptom free since the child obviously still has PANDAS and continues to become symptomatic sporadically even while continuing on daily antibiotics.

indeed, they were not "symptom Free" for ever. BUT in ALL cases, that is 100%, IVIG was effective. there was significant diminishment of symptoms. In all cases -- if I remember correctly -- kids are almost symtptom free. And, conversley, there are no cases in which IVIG did not work at all. that is absolutely AMAZING.

[MissionMama]

I admit to not reading the study...and I will...but at a high level glance I can report that we would be in the 100% of IVIG being effective. We are PANS...no known trigger, acute onset was 10/13, dx by 12/13, profound steroid responder multiple times (results never hold), then to HD IVIG 2/14 & 3/14. Within 3 months my DS was his best self ever. Period. Until a respiratory virus in 5/15....so a full year of remission...6/15 abx, more steroids...held only marginally functional until losing massive ground come start of the school year in early September. We are now 3.5 weeks post another HD IVIG and emerging back to the best kid we almost forgot we had....another HD IVIG in 3 weeks so we can tamp everything down barely further to get ahead of the curve. The plan after returning to baseline will be to have scheduled IVIG on some sort of a routine, almost preventative, schedule. Don't ask me how insurance will cover this plan, but we will have to find a way...

 

Gee, maybe I should read the study now? Sorry if my post is a giant bird walk!!!

 

My thoughts are consumed with all of us fighting this messed up battle.... Keep on truckin'!

 

Kristi

[Misskbrady]

We are considering IVIG as a treatment for our son's PANDAS. He has not responded to multiple rounds of antibiotics. My dr believes that insurance will not cover this. Has anyone gotten their insurance company to cover this treatment? We have BCBS. Any feedback would be appreciated!

[Albymom]

Hello.

 

This study was published in the journal in February, and made available online for free earlier this month.

 

"The" Swedo/Yale NIH IVIG study is still pending publication.

 

I have **heard** (via folks who recently heard Dr. Swedo speak) that the NIH study contained a design flaw that was realized only after the fact, much to Dr. Swedo's reported disappointment. My understanding is that she is working with the designers to modify the protocols and repeat the study. I believe the NIH study results will still be published, but I'm not sure how much it will help us from an insurance perspective.

 

This particular published study certainly gives us all good reason to be optimistic about IVIG. One objective critique is that these individual cases were hand-selected for publication; the overall patient N count is unknown. On the other hand, our own IVIG results have been very positive -- on some days I would even say "miraculous" -- but it's still too soon for us to call it since both of our IVIGs were done within the past 5 weeks.

[Wombat140]

Yes, the study doesn't even say that these case histories are *meant* to be a representative sample, so the fact that all of them recovered doesn't in fact tell you anything about what the overall success rate is. What it actually says is simply "12 patients with illustrative case histories were selected for this report". (And judging from a brief correspondence I had with him, Dr K is VERY pro-IVIg, to the point of largely dismissing everything else, so he probably would consider the most successful ones to be the most "illustrative" to publicise what he feels is The Treatment Everyone Needs To Know About.)

 

Still, it does show what's possible - those are wonderful results, congratulations to all those people and their families! And it tells you that that particular dose (1.5g/kg) and protocol are capable of getting those results, too. Maybe not in all cases but it evidently can do it in some.

 

Just curious - does anyone know: Were these case studies taken from Dr. K's practice, or were they compiled from multiple physicians?

They were from Dr K's practice, I've just spotted this line:

...case files from a large clinical practice specializing in the treatment of PANDAS were reviewed by the treating physician (M.K.)

[cynditk]

Hi Kristi,

 

I notice you are in WA- who is your doctor?

If you are planning for preventative dosing, does your child have immune deficiency?

Thanks for your suggestions, I am going to take them to our doc.

[MissionMama]

Hi Kristi,

 

I notice you are in WA- who is your doctor?

If you are planning for preventative dosing, does your child have immune deficiency?

Thanks for your suggestions, I am going to take them to our doc.

I sent you a PM.

[qannie47]

While we were and are still experiencing a very positive outcome from 2 IVIG about 19 months apart, what I would have liked to see in this publication is a percentage. How many kids received 1 or 2 IVIG's and how many of those experienced a positive/long term outcome. We were not cited in the report, yet I feel IVIG played an important part in my ds's healing.

 

Also, what I found most remarkable were the similarities with regard to my ds and the timeline of the first and 2nd IVIG. Somewhere around 1 year and 18 months...My ds fell into the tail end of that timeline at 18-19 months. Not sure at all what that means, but there sure seemed to be a pattern.

Edited November 30, 2015 by qannie47

[nicklemama]

I found the study interesting. My son was classic sudden onset. He had IVIG twice in Chicago, 19 months apart. It did not keep him from becoming symptomatic again. I'm happy it worked out for these 12 but it is not representative for every child. I would like to know the overall percentage of children helped by IVIG. Dr. K follows up at 3, 6 and 12 months and then no more. It's been three years, to this day, since his last IVIG.