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IVIG # 2 do more harm than good?

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Has anyone heard of IVIG #2 doing more harm than good if there wasn't much improvement at all from IVIG #1? I know there has been some conversation and controversy about possible permanent brain damage with some of the older kids with ongoing, untreated PANDAS. Dr. K said, "IF we decide to do another IVIG because it might cause more harm than good." I am wondering why the "IF"? Has anyone had little to no improvement with IVIG #1 and still had #2?

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Can someone plz get to the bottom of all of these medical assumptions Dr K makes, we on this forum ask for real science from our docs everyday, yet for years Dr K has non medical terms and assumptions we never get any explanations for. How exactly does he think ivig works? What the H*** is turning back of the pages? Do other autoantibody diseases see this type reaction from ivig? Why would one be ok and two make u worse. If high dose is antiinflammatory and one doesn't help, how can two be worse? Why would monthly ivig hurt our children. I know of several kids whom are in complete remission from monthly ivig. Please Dr K patients, what does he feel ivig does to cure the child? I am a little fed up with all of us challenging all the other docs, Singer, Swedo, Triffelti and Dr L but we always sit back and get NO SCIENCE answers from Dr K and we never push him for better understanding? Is an 80 percent cure the best to expect? How many kids has he done multiple ivigs on? All other autoimmune diseases see success with more ivig rather than less. Even in Swedo's study of SC the kids had three ivigs, until they saw improvement. I am anxious to here some of these answers. We all need better direction and scientific assumption of why or why not.

Has anyone heard of IVIG #2 doing more harm than good if there wasn't much improvement at all from IVIG #1? I know there has been some conversation and controversy about possible permanent brain damage with some of the older kids with ongoing, untreated PANDAS. Dr. K said, "IF we decide to do another IVIG because it might cause more harm than good." I am wondering why the "IF"? Has anyone had little to no improvement with IVIG #1 and still had #2?

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Nevergiveup is asking good questions. It would be very helpful to understand the thinking behind statements such as "turning back of pages" and "do more harm than good" (what kind of "harm" for example). Intuitively and historically, serial IVIG for autoimmune diseases makes sense and has worked - would that not include PANDAS?

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ok so we saw dr.k last week for ivig. as far as the second ivig being possibly harmful, i dont know, we did not talk about a second one. he did say that if pandas goes untreated, that the symptoms will still wax and wane; but the better moments slowly become more and more abnormal, and the kid more dysfunctional. he also said something like (i hope i am remembering correct) 78% of kids (in his experience) only need 1 ivig, and the rest need a second. (he has treated over 200 kids i think)

 

when i asked his thoughts on why ivig works, he said (not quoting him, just from my bad memory!)that the ivig floods the body, and your body stops producing antibodies because of it. then when the ivig starts to fade, your body sort of "re-boots", and immune system starts working again normally.

the whole part of symptoms suddenly dissapearing, could be due to a "cleansing" in the brain. leftovers that are in the brain from the antibodies are flushed out. the "turning back the pages i think is just like the "saw tooth recovery", you will have improvement, and then some bad times mixed in. i dont think he had an explaination for that, other than it is just what happens. it seems that he speaks from his own personal experiene having treated so many.

hope this helps,

 

this is just my unfancy take on what he told me. i am sure others could explain it in a more scientific manner.

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It is somewhat helpful, he is going with the assumption that the sialic acid found in ivig at a high enough dose turns off production of antibodies. And after time the bad antibodies are not produced any more. But some feel ivig may also redirect autoantibodies by attaching to existing antoantibodies. So I guess he only believes in the sialic acid mechanism of ivig. So if our children do not stop producing bad antibodies then ivig will never work? Is this his assumption? So why not constantly shut off the production and substitute with donor antibodies. Like in CIDP monthly. Its a very high dose though? I heard IGG levels must be around 1700 to eliminate autoantibodies. Apparantly this number is used for Other disease. Has Dr. B ever measured igg levels in between his 8 week high doses? Still do not understand the "harm" part. If we know our kids have autoantibodies from cunningham how can more ivig harm them? Does Dr ' use cunningham test as pandas indicator? In t

ok so we saw dr.k last week for ivig. as far as the second ivig being possibly harmful, i dont know, we did not talk about a second one. he did say that if pandas goes untreated, that the symptoms will still wax and wane; but the better moments slowly become more and more abnormal, and the kid more dysfunctional. he also said something like (i hope i am remembering correct) 78% of kids (in his experience) only need 1 ivig, and the rest need a second. (he has treated over 200 kids i think)

 

when i asked his thoughts on why ivig works, he said (not quoting him, just from my bad memory!)that the ivig floods the body, and your body stops producing antibodies because of it. then when the ivig starts to fade, your body sort of "re-boots", and immune system starts working again normally.

the whole part of symptoms suddenly dissapearing, could be due to a "cleansing" in the brain. leftovers that are in the brain from the antibodies are flushed out. the "turning back the pages i think is just like the "saw tooth recovery", you will have improvement, and then some bad times mixed in. i dont think he had an explaination for that, other than it is just what happens. it seems that he speaks from his own personal experiene having treated so many.

hope this helps,

 

this is just my unfancy take on what he told me. i am sure others could explain it in a more scientific manner.

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I have been wondering about this as well - about Dr. K's theories - and have always wondered how he supposes it to work. I don't know of any other autoimmune disease where the production of autoantibodies stops permanently after one treatment. If the autoimmune process was infection-triggered and not "constitutional" regardless of trigger, I can see how one treatment could put an end to one episode: once you stop the process, and assuming that the trigger is no longer present or can be suppressed, I can imagine that you could get a complete remission. But what I can't understand is how you then avoid winding up with the same process again, the next time a trigger comes around. I have tried to think of other autoimmune diseases for which the body can be "rebooted" to permanently cease creation of autoantibodies even in the presence of continued triggers - and have drawn blanks (though I may be missing something...). I would also like to know what length of follow-up he's talking about when he states that 78% only need 1 IVIG. As someone who's had PANDAS for more than 35 years, I can say that I've gone more than a decade at a time without getting triggered - but as recently as last year, I got triggered (a Medrol pack and course of Augmentin put an end to it). So without a VERY long follow-up, I think it's hard to say that 1 IVIG is all it takes.

 

The one piece of the puzzle that I've thought might explain what Dr. K observes has to do with the blood brain barrier. As one ages, the blood brain barrier becomes less susceptible to the effects of inflammation (less permeable). So, if you can stop the production of damaging autoantibodies for long enough for the BBB to mature, and if you can keep the trigger suppressed for a long time with antibiotics, then perhaps by the time the trigger comes around again unsuppressed, the brain doesn't "see" it because the bad antibodies aren't getting in there, thanks to a matured BBB. I had Cunningham tests done a few months ago for the heck of it, and was quite shocked to see that I had elevated anti-dopamine antibodies, because I had been having no symptoms whatsoever. I can only guess that those antibodies weren't getting into my brain in noticeable quantities, thanks to a mature BBB. The infection that did trigger me last year involved VERY severe inflammation - a sinus infection like I'd never had in my life, I couldn't function at all - so perhaps in that case the inflammation was bad enough to cause even my mature BBB to be more permeable.

 

I also wonder if the "turning back of the pages" has something to do with cycles in the regulation of inflammatory cytokines, and their impacts on the BBB.

 

I also haven't understood why monthly IVIG would be bad. I think that it would be important to look at immune deficient vs. immunocompetent patients here. I can imagine that for patients with normal IgG levels, maybe supplementing again and again and again could get levels way too high, and perhaps this could be damaging. But for patients that are immunodeficient, which seems to be a fair fraction of PANDAS, I don't understand the potential source of harm and it's something I'd really love to understand. My kids both have significant immune deficiencies that require monthly IVIG in order for them not to get extremely ill physically, so we had no reasonable choice but to go that route... we worried about the impact on PANDAS, but I have to say, they've done great on it. We had a PANDAS blip (two bad days, another day or two of moodier-than-usual-for-him-but-within-normal-range) in only one of the two kids last week after they both got strep impetigo, but the PANDAS got back under control quickly with a change of antibiotic. (We'll be doing a high-dose IVIG next week at their regularly scheduled time, rather than a mid-dose, just for extra insurance.) Other than that, they've done very well PANDAS-wise, 100% remission over significant time periods (months).

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When we saw dr k back in june he said you have to be careful with the 2nd ivig because it could make the 1st one less effective. That's what I remember and dandd, I have a bad memory too.

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We, too, had a consultation with Dr. K., though we haven't moved forward with IVIG and likely will not. Our DS13 does not demonstrate any immune deficiencies, and he is responding to long-term abx, supplements and therapies so we are not currently compelled to move forward in this regard.

 

I can, however, concur with what the others have put forward as to what Dr. K. states with regard to IVIG and its efficacy for PANDAS. He told us, too, that it "reboots" the immune system so that it functions properly again.

 

Please know that we immediately liked Dr. K. and have high regard for his willingness to step outside the conventional western medicine box and help all these PANDAS kids. He definitely has experience on his side. I do think, however, that he is not equipped to fully explain all the technicalities behind why he's been getting the results he has, or why he feels the way he does about other protocols as, though he's an experienced clinician in the field of PANDAS, he's not an immunologist or an infectious disease expert or any of those other specialty practices. He's a pediatrician who's helped hundreds of families, and he frequently doesn't see a PANDAS case until it has devolved to the point at which all other interventions are viewed as having failed so now it's time for IVIG.

 

It's my humble opinion, therefore, that much of what he espouses is based solely on 1) previous experience with his particular patient load, 2) logical relationships he, as a physician, draws between various immune conditions and PANDAS and their responses to IVIG treatment, and 3) ideas, questions, concerns and observations his patients' families present to him.

 

In the end, I hope that his collaboration with the NIMH PANDAS "dream team" which includes Swedo, Leckman, Cunningham, Trifilleti and a number of other prominent docs and researchers in the field will help pull all the pieces together. Then hopefully we'll have both the full science and the full compassionate care components in hand for our kids.

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MomWithOCDSon, thanks for a summary of Dr K's experience and background. From what I do know about the NIH mtg, many left the mtg realizing that we really don't know a lot about this illness, getting better info but still have a long way to go. I am still looking for info in regards to monthly ivig versus one. To be realistic, how can most afford monthly ivig without an immune def diagnosis, and what data could Dr. K have on this since he hasn't had patients whom can afford a 100,000 dollars a year treatment. I know Melanies immunologists, my immunologists and one more I consulted in Florida, whom have better success with regular immune treatments. So again, if u talk with Dr K any insite into his info data would be great. I really want to understand if his thought process doesn't want to scare the parents or send them into bankruptcy so trying one ivig or two may be best. But saying multiple is harmful needs further clarification since many parents have kids with immune def's and are looking for better answers.

We, too, had a consultation with Dr. K., though we haven't moved forward with IVIG and likely will not. Our DS13 does not demonstrate any immune deficiencies, and he is responding to long-term abx, supplements and therapies so we are not currently compelled to move forward in this regard.

 

I can, however, concur with what the others have put forward as to what Dr. K. states with regard to IVIG and its efficacy for PANDAS. He told us, too, that it "reboots" the immune system so that it functions properly again.

 

Please know that we immediately liked Dr. K. and have high regard for his willingness to step outside the conventional western medicine box and help all these PANDAS kids. He definitely has experience on his side. I do think, however, that he is not equipped to fully explain all the technicalities behind why he's been getting the results he has, or why he feels the way he does about other protocols as, though he's an experienced clinician in the field of PANDAS, he's not an immunologist or an infectious disease expert or any of those other specialty practices. He's a pediatrician who's helped hundreds of families, and he frequently doesn't see a PANDAS case until it has devolved to the point at which all other interventions are viewed as having failed so now it's time for IVIG.

 

It's my humble opinion, therefore, that much of what he espouses is based solely on 1) previous experience with his particular patient load, 2) logical relationships he, as a physician, draws between various immune conditions and PANDAS and their responses to IVIG treatment, and 3) ideas, questions, concerns and observations his patients' families present to him.

 

In the end, I hope that his collaboration with the NIMH PANDAS "dream team" which includes Swedo, Leckman, Cunningham, Trifilleti and a number of other prominent docs and researchers in the field will help pull all the pieces together. Then hopefully we'll have both the full science and the full compassionate care components in hand for our kids.

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I know of several families where the monthly IVIG's seemed to either stop being effective or seemed to create more symptoms. My theory, and this is just a theory, is that these children had underlying chronic infections and maybe the IVIG's were creating too strong of a herx reaction or "stirring up the antibodies" too much. Granted, 5 out of these 6 families had lyme or bartonella or babesia as an underlying infection. My son did great with the first high dose IVIG and then we started doing monthly low dose IVIG's and he eventually started to backslide (after the 3rd low dose IVIG) and then we finally did one last high dose IVIG and stopped 7 months ago and instead added a second antibiotic for lyme and he is doing fantastic now.

 

Dr. K and our lyme doctor thought that our children's failed S. Pneumo titers and low IGG's were the result of an infection versus the cause of the illness. My daughter never did have an IVIG and I plan to retest her Cunningham levels (which were all very high) as well as her S. Pneumo titers (she failed 13 out of 14) and her IGG's in a month when she finishes her lyme treatment to see if they have improved with just the multiple antibiotic treatment. I think this will be interesting to see since my son is the one who did all of the IVIG's and we went with an entirely different approach with our daughter.

 

elizabeth

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In light of KeithandElizabeth's hypothesis that the ones who do worse with multiple IVIGs are the ones with multiple infections, I should add that my kids have been tested for everything repeatedly - Lyme, Mycoplasma, intestinal infections, etc. - and the only thing that's ever come back positive has been Strep, Strep, Strep. They have never had mysterious PANDAS episodes that have not been linked to clear, clinically evident strep infections, and their PANDAS has always been mild. So I think my kids are relatively uncomplicated PANDAS cases from that perspective (so far, knock wood). Also, we have seen 3 immunologists now, including Dr. B, and all 3 believe that my kids have primary immune deficiencies; no-one has suggested that their immune deficiencies might be secondary to infection. I don't know how they know - maybe it's a matter of how low their numbers were or of the profile of the different numbers, or their histories of infections and other immune problems, or perhaps family history. Nevertheless, all of them did want to do a trial off of IVIG after 6-12 months (pending the results of their B-cell tests), to see if it might be a developmental primary immune deficiency that corrects itself, since they are very young (ages 3 and 6 when diagnosed).

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Dr. K and our lyme doctor thought that our children's failed S. Pneumo titers and low IGG's were the result of an infection versus the cause of the illness. My daughter never did have an IVIG and I plan to retest her Cunningham levels (which were all very high) as well as her S. Pneumo titers (she failed 13 out of 14) and her IGG's in a month when she finishes her lyme treatment to see if they have improved with just the multiple antibiotic treatment. I think this will be interesting to see since my son is the one who did all of the IVIG's and we went with an entirely different approach with our daughter.

 

elizabeth

 

Elizabeth - thank you so much for input. I agree that clearing out infections prior to IVIG seems important, and I have noticed that families who have trouble with IVIG often go on (later) to find underlying lyme or mycoplasma.

 

I am wondering, though, about your statement that infection can CAUSE low s. pneumo titers. I don't understand how that happens. It seems that if there is an infection and the child has a fully functioning immune system, we should see elevated titers in whatever they are fighting off. Could (or another forum member) explain this to me? I am not questioning if it is true - just trying to get this concept in my brain.

 

 

Thanks!

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Exactly, all of the families whom were having trouble with lower dose monthly ivig now either have lymes and I believe one had IGA concerns. So many on here have come to the understanding that monthly ivig is hazardous. One thing for sure from all of this BEFORE u start ivig get the igenex test. But now we all need to rethink the monthly ivig issue. Was it lymes, and coinfections that caused Dr K to say monthly is not working?quote name='KeithandElizabeth' date='06 September 2010 - 01:41 PM' timestamp='1283794914' post='82719'

I know of several families where the monthly IVIG's seemed to either stop being effective or seemed to create more symptoms. My theory, and this is just a theory, is that these children had underlying chronic infections and maybe the IVIG's were creating too strong of a herx reaction or "stirring up the antibodies" too much. Granted, 5 out of these 6 families had lyme or bartonella or babesia as an underlying infection. My son did great with the first high dose IVIG and then we started doing monthly low dose IVIG's and he eventually started to backslide (after the 3rd low dose IVIG) and then we finally did one last high dose IVIG and stopped 7 months ago and instead added a second antibiotic for lyme and he is doing fantastic now.

 

Dr. K and our lyme doctor thought that our children's failed S. Pneumo titers and low IGG's were the result of an infection versus the cause of the illness. My daughter never did have an IVIG and I plan to retest her Cunningham levels (which were all very high) as well as her S. Pneumo titers (she failed 13 out of 14) and her IGG's in a month when she finishes her lyme treatment to see if they have improved with just the multiple antibiotic treatment. I think this will be interesting to see since my son is the one who did all of the IVIG's and we went with an entirely different approach with our daughter.

 

elizabeth

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Exactly, all of the families whom were having trouble with lower dose monthly ivig now either have lymes and I believe one had IGA concerns. So many on here have come to the understanding that monthly ivig is hazardous. One thing for sure from all of this BEFORE u start ivig get the igenex test. But now we all need to rethink the monthly ivig issue. Was it lymes, and coinfections that caused Dr K to say monthly is not working?quote name='KeithandElizabeth' date='06 September 2010 - 01:41 PM' timestamp='1283794914' post='82719'

I know of several families where the monthly IVIG's seemed to either stop being effective or seemed to create more symptoms. My theory, and this is just a theory, is that these children had underlying chronic infections and maybe the IVIG's were creating too strong of a herx reaction or "stirring up the antibodies" too much. Granted, 5 out of these 6 families had lyme or bartonella or babesia as an underlying infection. My son did great with the first high dose IVIG and then we started doing monthly low dose IVIG's and he eventually started to backslide (after the 3rd low dose IVIG) and then we finally did one last high dose IVIG and stopped 7 months ago and instead added a second antibiotic for lyme and he is doing fantastic now.

 

Dr. K and our lyme doctor thought that our children's failed S. Pneumo titers and low IGG's were the result of an infection versus the cause of the illness. My daughter never did have an IVIG and I plan to retest her Cunningham levels (which were all very high) as well as her S. Pneumo titers (she failed 13 out of 14) and her IGG's in a month when she finishes her lyme treatment to see if they have improved with just the multiple antibiotic treatment. I think this will be interesting to see since my son is the one who did all of the IVIG's and we went with an entirely different approach with our daughter.

 

elizabeth

 

Nevergiveup - I was a little confused with your post because the quotes did not work out right. Are you saying that you do NOT think monthly IVIG is automatically dangerous... but it could be a problem if there are underlying lyme or other infections?

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The lyme has really muddied the waters for me. I am not sure which way to go. After all, many of our parents have found out their children may have lymes and also parents have it. All of this discovery is great, and leading to better health for our children! I am still stuck on why multiple ivig is harmful to Pandas patients. I do not see any cases of this, now that we have eliminated the lyme component. Plus Dr K gave three ivigs to SFMOMs son who saw great improvement. (Although now may have lymes too). Co infections are crucial for resolution, so maybe ivig is all wrong. It appears many just need abx, like Murphy thinks and Saving Sammy. Is this all infection, and not autoimmune? Now I am really confused? If u feel coinfections lead to immune def's then maybe ivig is ALL wrong. Is this why Trifilleti calls ivig a cooling off and pushes abx, multiple types like cefdinir and biaxin?

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