High Dose IVIG 2gr per kilogram

[nevergiveup]

Autoimmune Diseases are difficult. They relapse and remit at random times. I have been fighting to understand this illness for 7 years and SF MOM, Coco, Buster, Eamom all have got this thing well understood. High dose ivig fights autoimmune antibodies, it shuts down the bone marrow and allows the body to not produce the dangerous antibodies. This is a battle and the body may start reproducing autoantibodies again if triggered even years after symptoms have gone away. The idea here is with an increase in autoantibodies then additional high dose ivig may be necessary. I recently spoke with one of the leading ivig specialists in the world, he has a specialty in immune deficiency and autoantibodies. Treats kids with super high dose ivig for all types of autoantibodies. A lot of these kids get regular high dose ivig. He had done a study once on SC and said these antibodies are extremely hard to get rid of. Once they get in the brain they bond, stick like glue and it is very difficult to get them out. Not what I wanted to hear. Anyway, although the whole pandas idea still is not this doctors thing, Cunninhams test are very credible in his mind. If you can show your child has these autoantibodies it add credibility to justify treatment. And in his mind the only ONLY effective safe treatment is high dose ivig at 2 grams per kilogram. Maybe one time, maybe more but you need to see the cunningham antibodies reduce dramatically. Other treatments would probably help, like b cell treatments used for lupus, but these are risky treatments and require ivig also to help replace what the drugs remove. So the tides are changing, but blood markers are critical.

[coco]

This is outstanding news...thanks so much for posting. I believe high-dose is critical for kids who have had untreated Pandas for a very long time. I totally "get" how the antibodies stick to the brain and are exceptionally difficult to eridicate. This needs to be hit HARD from the get-go, and perhaps, with corresponding IV abx to knock it flat. Ceftriaxone is what my dd rec'd in the hospital for a URI and all symptoms went in remission for 4-5 months. It is also a powerful lyme's abx. This is a great post and I will certainly present this to Dr. B. Just spoke at length about with him yesterday as my dd was getting another ivig and he is swayed enough to go with the 2.0 for the next round...I should have pushed harder yesterday while we were there. Thanks so much for sharing this! The mountain is moving!!!

 

coco

[sf_mom]

Thanks for posting as it only provides confidence in our recovery!!

 

I think the key is shutting down the bone marrow and I understand this happens at any amount above 1 gram per kilogram (but don't quote me on that number). I am sticking with the experts and what is working for us and that is anything above 1.5 grams per kilograms. It is my understanding anything less than 1 gram per kilogram can just stir the antibodies up both good and bad.

 

I also think the higher dose antibiotics work for a similar reason...... when re-exposures happen it suppresses the immune system from generating both the good and 'bad' antibodies because the antibiotic is doing a larger portion of the work.

[Diana]

One more response from California - we have a little cluster of pandas here - thank you Buster, EaMom and SFMom. The 1.5G per kilogram was measured out quite specifically per unit of blood/body/igg volume. The 2.0G that Swedo came up with was a typical dose used for Guillane Barre.

 

I have recently talked with Swedo and she is agreeing that Dr. Kovacevic's dose of 1.5G/1kg is sufficient. But, hey, if you have the money - do more. The bottomline is IT TAKES TIME for the CamKinase (Cunningham has measured) and the requisite auto-antibodies to die down. I measured my son's CamKinase during exacerbation - approx. 180 above normal. Then 3 months after IVIG - 165% above normal - he was symptom free at this point (last August). I asked Cunningham, "How can it be he is symptom free with this numbers and high antibodies?"

 

Her response: "Likely it is the T-Cell and B-Cells fighting off the antibodies. Doing the hard work IVIG should be doing and replacing the bad and bringing in the new. It takes approx. 6 mos for the IGG's to entirely fall off post-ivig." I measured his CamKinase at 6 mos - and she was right - CamKinase came down to 102% - NORMAL. He continues to be "normal" in his behavior. My son is now nearly 1 year post-ivig (Case #1 on the pandasnetwork website) and I'd say pretty darned near without symptoms. I'll keep you posted. I say "darned near" because when my 5 yr old daughter had Fifth's Disease early December - he had a uptick in pale face, dark eyes, and strange mouth grimacing. I slapped it down promptly with an increased dose of antibiotics.

 

The bottomline is - this is a battle that the body is fighting. At 3 mos. post-ivig give or take a few weeks; either the IVIG would have succeeded or failed. I think the numbers you see above bear this out.

 

THIS IS NOT A PERFECT RECIPE to cure any illness. There is a PROBABILITY. I am working hard trying to get Swedo and others to document our cases clearly. I am sending out an email to those that are part of the tiny-PANDASNetwork website. A lot of us are working on this front. If the "NEVER GIVE UP" mom wants to contact me (or maybe I know you??!!) please do so. I hope this helps folks.

 

There is always a chance that some children have other factors that are inhibiting kids progress. I am hearing this over and over again: 1) other family members have strep that wasn't noticed by the parent; 2) autism; 3) a history of severe family autoimmune illness.

[Diana]

Sorry - to clarify - the December uptick lasted all of 3 hours and scared me. But it went away. He is fine now.

 

Repeating additional IVIG's at month 2 or 3 doesn't give the body time to let the CamKinase die down?!? We don't know for sure. It is white-knuckle time for parents and we just have to watch. Within 6 mos. there will be more stories of cure or no cure. We just need to be a bit patient and TRY to trust the doctors who cannot show their records to us.

 

Latimer, Trifiletti, Kovacevic, Swedo - they are all pretty certain that a TYPICAL pandas case (sudden onset) should get better. If the child has had pandas for a very longtime - for years exacerbations -- go to Kovacevic. He has the most experience with the long term cases. They will be more difficult. That is sadly logical. You guys are all heroes. You're paving the way. The stories are being collected......or you're doing it.....the more the merrier.

 

Let's hold hands. Be Patient. Steady as we go. In 6 mos. more good news. In one year even more good news. Let's hang in there.

[KeithandElizabeth]

Thanks Diana!!! This was very valuable information.

 

Dr. K did confirm the 1.5 dose with us as well and said anything more is inconsequential. This can be especially important, as Diana said, when parents have to pay out of pocket.

 

Thanks again,

 

Elizabeth

[laurenjohnsonsmom]

Diana,

 

I could not have said it better myself (nor do I have time these days in the middle of IVIG treatment/traveling).

 

Thanks for the information packed post! We are the pioneers regarless if we like it or not. We are learning with the doctors and we go along. No one has the exact answers right now. Who's hiding the "easy button"!

 

Lynn

 

 

Thanks Diana!!! This was very valuable information.

 

Dr. K did confirm the 1.5 dose with us as well and said anything more is inconsequential. This can be especially important, as Diana said, when parents have to pay out of pocket.

 

Thanks again,

 

Elizabeth

[smartyjones]

Her response: "Likely it is the T-Cell and B-Cells fighting off the antibodies. Doing the hard work IVIG should be doing and replacing the bad and bringing in the new. It takes approx. 6 mos for the IGG's to entirely fall off post-ivig." contact me (or maybe I know you??!!) please do so. I hope this helps folks.

 

 

so i still can't seem to get a handle of what ivig does -- is it a regenerating of t-cells that we need?

[EAMom]

I have recently talked with Swedo and she is agreeing that Dr. Kovacevic's dose of 1.5G/1kg is sufficient. But, hey, if you have the money - do more.

 

In our case, Dr. K. actually recommended we do the higher 2gm/kg dose b/c of dd's hx of PANDAS anorexia and her (slighter older) age (she was 9 when she got IVIG). I understand the PANDAS anorexia cases are more likely to need a repeat...so it makes sense to go with the higher dose (on the theory that it decreases your chance of needing a 2nd round). Our dd also could be considered a more severe case...as her CaM kinase ll in an exacerbation was the highest Dr. Cunningham had ever seen (253)...out of an excaerbation she was still in the high PANDAS range. For us the extra cost of the higher dose was inconsequential if that decreased the need for a 2nd IVIG (and getting approval locally, dealing with insurance, or flying to Chicago because the local docs were only willing to okay 1 IVIG for us). So, I suppose I'm still a proponent of the higher (2gm/kg) dose if it gives anyone a better chance of not needing a repeat...and we do know that there are kids on this forum that have repeated IVIG after 1.5gm/kg.

[nevergiveup]

1.5 or 2.O, the point is high dose not low dose monthly ivig, Diana whatever noise this has generated I would gather its good noise, the idea is the Dr 'ks philosophy about shutting down the immune system comes from ivig specialists whom know that autoimmune disease needs high dose ivig? The bone marrow has to be altered in its production of auto antibodies, and as much as I admire all the pandas docs and the barriers they have crossed, the autoimmune guys treat aggressive autoantibody disease everyday and after years of studies now realize high dose alters the immune production. Reality is, this is an autoimmune disease and they do go into remission and do relapse its the nature of the autoimmne diseases. In addition some kids may have the immune system altered and go into remission, while others may need additional trtmts and regular immune modulation. You have to be kdding to assume all go into remission after one year. Let's use MS as an example, shall we, some regress, some relapse, some are in remission. Dr L has patients whom return every three years for another ivig? So if we believe one solutuion works for all we are doing all the parents out there a disfavor, Swedo did 2 grams, high dose, which does put our kids at risk for more serious side effects from ivig, Dr K does 1.5 and has a 80 percent effective rate. At what dose are we guaranteed bone marrow shut down? The higher the dose the more likely. Buster did 2 grams, my kid did One gram with Dr L and now Dr K is saying that level could make things worse. (She's not where I want her ) Please.... Are we experimenting on these kids????? I feel that the ivig specialists who treat autoimmune diseases know how to eliminate antibodies, and that's what we are dealing with autoantibodies. Swedo studies supports this dosage, so does many other childhood autoimmune disorders treated with ivig. Dr K dose may work for many, but the cost and side effects need to be considered if you need additional therapy or if this dose is not strong enough to shut down the immune system. Not to mention the ivig imune specialists whom treat autoimmune disease everyday, oh yeah and how about Swedo? I am not sure Cunningham is the specialist in ivig. She is an amazing scientist but not an ivig expert nor does she treat aggressive autoimmune pediatric disorders everyday. This is a learning process for all and actually I am not believing that we all believe a permanent cure is inevitable. I will keep fighting for that and if my child need more immune modulation I will make sure she gets it. I am stating the facts from some very credible immune docs whom work with autoantibodies everyday. Are these not the type of docs we want working on pandas? They have never believed in the past and are slowly changing their minds because Cunningham has identified the autoantibodies. But to pretend we know better does not make sense.

[EAMom]

Dr K does 1.5 and has a 80 percent effective rate.

 

My question of the day is...if Dr. K. routinely did 2gm/kg (instead of 1.5gm/kg) would his success rate rise from 80% to 90% or higher?

 

And what else could we be doing for the "other" 20%? In WorriedDad's case, it was high dose augmentin xr (after multiple IVIG's) that did the trick...I think we need to keep asking questions and not just accept 1.5gm/kg as the final answer in all cases, since obviously that's not the case.

[Kayanne]

Dr K does 1.5 and has a 80 percent effective rate.

 

My question of the day is...if Dr. K. routinely did 2gm/kg (instead of 1.5gm/kg) would his success rate rise from 80% to 90% or higher?

 

And what else could we be doing for the "other" 20%? In WorriedDad's case, it was high dose augmentin xr (after multiple IVIG's) that did the trick...I think we need to keep asking questions and not just accept 1.5gm/kg as the final answer in all cases, since obviously that's not the case.

 

I agree whole-heartily...ALL options should be on the table...steroids, antibiotics, IVIG, Pex and PlasmaPheresis.

 

I'm very grateful to Dr. L for treating my daughter with a prednisone. It has (so far) spared my family the stress of having our daughter go through a medical procedure...not that I woudn't do it if was called for.

 

But for the cases that are caught early, and have few contributing factors to exercerbate...the big procedures may not be necessary...at least not right away. It doesn't seem right to push every child into the same treatment protocol. HOWEVER, I do agree that a more standard protocol should be set up that...But mostly I think the word needs to get out to the pediatricians so that more cases are caught early!