I have been told only 1 IVIG

[EAMom]

THanks Nevergiveup....some good info. to think about.

 

My concerns:

 

-has anything been published on 1gm/kg (or lower dose) every 21 days for PANDAS kids?

 

-isn't this overall more expensive/invasive (vs. high dose every 6mo. or 1 or 2x). For those of you that are getting lower dose every 21 days, does insurance cover everything? (Even though insurance covered our high dose IVIG's, we still ended up paying over 2k our of pocket each time). It seems that this approach, even if effective, would be cost prohibitive for those without the "right" insurance or diagnosis. And that would also assume you have an infusion center close enough willing to do the procedure multiple times. Honestly, if we told our local immunologist we wanted to do IVIG every month, I'm pretty sure he'd laugh out loud at us. (in other words, we were lucky to get the 2 infusions we did, many PANDAS kids in our area fly to Chicago for treatment).

 

-have these docs that are using lower dose (eg. 1gm/kg) ALSO used higher dose (1.5-2.0gm/kg)in a significant number of PANDAS kids and found it didn't work as well?

 

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I know swedo and Dr K do one dose high, and Dr B does high every 8 weeks but some kids don't have an infection anymore, and have a chronic state of making antibodies and need to be treated as such.

I would actually expect that this is the situation where high dose would work the best. If the infection is not cleared (chronic strep in tonsils, or chronic exposure to strep household) I wouldn't really expect high dose work (beyond the first month).

 

There are a couple of kids on this forum (Keith and Elizabeth?) who found that high dose wasn't working, and then found out they still had "an infection" (lyme for KeithandElizabeth) or persistent strep ( Worried Dad's case, strep in the household), where high dose IVIG wasn't working...until the infections were brought under control.

 

 

 

In my dd's case, she has no immune deficiency, and had been on treatment strength Azith. (plus other abs) for 1.5 years before IVIG. There was no evidence of infection. Our immunologist felt that high dose would be very anti-inflamatory (so perhaps "turning off" the inappropriate immune response). And, in her case, 2 (so far, knock on wood) HD IVIG's have worked well.

 

 

 

-it seems that of those who have had both HD and low dose IVIG (NancyD is the immediate example that comes to mind http://www.latitudes.org/forums/index.php?showtopic=10142&pid=85490&start=&st=#entry85490), they feel that it is HD that has made the big difference (note I think NancyD's dd is also older and I don't know how low her Low dose was). Peglem also found that 1.5gm/kg worked better than low dose (her was also lower than 1gm/kg, so perhaps not a fair comparison).

 

-I'm not saying that frequent lower dose wouldn't be appropriate for a PANDAS kid with say, an ongoing immune deficiency...that is another situation altogether.

 

-and since the original Question ("I have been told only 1 IVIG") was talking about, what happens if more than 1 is needed...I thought it made sense to focus my answer on high dose, since *NOBODY* is saying that 1 low dose IVIG is going to be enough with PANDAS ('cause why would they automatically schedule it every month?). When we talk about hoping to "fix" PANDAS with a single IVIG (usually over a course of 2 days) or possibly two, it is ALWAYS high dose (1.5-2gm/kg) that people are talking about. (That is why, in my original answer, I said that low dose was a whole different story.)

 

-yes, it would be nice if there was a great big double blind study to compare the effectiveness of various doses (0.4gm/kg, 1.0gm/kg, 1.5gm/kg, and 2.0gm/kg)...so we could have some real answers

 

-the fact that those doing low dose IVIG, pretty much as a matter of course, are doing it every 21-30 days, makes me wonder how effective (I'm talking long term, not temporarily) this treatment is for PANDAS kids. Are these docs planning on treating these kids every 21 days for 6 mo. or 12 mo. or 5 years, or forever? (It seems a shame go through all that without trying a couple of high dose IVIG's first....especially when we're not talking about a huge difference in dose 1gm/kg vs. 1.5gm/kg.)

[norcalmom]

For all of the Dr B patients, check your kids trough levels see if they match symptom remission. This means get weekly igg level after ivig for the 10 weeks post ivig. ..... My dd had a clear pattern of symptom remission and resurgence after 9 days of ivig each month.

 

 

Are you saying that your ivig only works for 9 days???

 

Does your child have a primary immune deficiency? I know that many pandas kids have some immune def. some worse than others. Can you give us examples of what her igg levels do? My DS is somewhat low, but doesn't come close to qualifying for this. Also, I was shocked to see that he had low igg and failed strep pnemonaie titeres - he doesn't get sick that often, and if he does, he gets well...at least from the virus (but it sets off his pandas)

 

What I'd like see is a cunninghams test post ivigs - if we all agree that the anti-neuronal antibodies are what is messing up our kids behaviors/brains- that should correspond with behaviors.

 

I really do think that primary immune def. treatment is another whole ball of wax. Pandas would be secondary no?

[nevergiveup]

Eamom, If the children have high antibodies attacking the body (Cunningham antibrain antibodies) then this is an autoimmune reaction. Triggered by something. Most likely something infectious. Obviously avoiding the infectious trigger will prevent relapse, so long as the body is not chronically producing autoantibodies. In many of these kids they receive high dose ivig, and the cunningham tests go down but then they come back again, even without a strep trigger, maybe now just a viral trigger. Starting to look like more of an autoimmune disease rather than an autoimmune REACTION.

 

One gram per kilo gram is high dose, 1 gram to two grams is high dose ivig. Every 21 days is the standard for ivig for autoimmune disease. Not every 28, this is for immune deficiencies. Immune def's are treated at 500 to 600 mg/kilogram , autoimmune at 1 gram or above. All autoimmune diseases depending on the number of autoantibodies and the disease and each individuals need to look at symptoms to determine dosage. Maintaining trough levels at 600 - 800 for immune def's is sufficent, for autoimmune disease troughs need to be maintained at 1900 more or less. Each child metabolizes the donor antibodies differently, so dosage and frequency need to be monitored. More athletic kids eat up the globins because it is a protein and we do burn it. If the child has lymes I cannot speak on this, ivig may not help. But for high antibrain antibodies it does redirect the autoantibodies. While taking ivig every 21 days, abx is a good idea to rid the body of infection, but if the disease is treated properly with ivig every 21 days improvement should be seen in 3 to 6 months. Trough levels and symptoms need to be evaluated, if symptoms resurface the child may need higher igg levels, hence higher doses. An immunologist will balance the ivig dosage and increase slowly over time to minimize side effects, hence eliminating the turning back of the pages. The ivig if it stimulates the immune system can make symptoms worse short term. (fever) As for studies, examine all the studies for lupus, (neuropsychiatric symptoms only studies, ocd, chorea and depression), cipd, adem, ms etc....... The protocol is the pretty much the same for all. As for studies, only one has been done by swedo with a reduction of symptoms at one year still not 100%, nor has Dr. K gotten 100%. If the autoimmune disease is in a very aggressive state, causing all sorts of organ damage, then the immunologists will start with a 2 gram dose and later switch to 1 gram or higher every 21 days, according to symptoms and side effects. In some cases the ivig can go up to 2 grams each 21 days, like in adem, but not for most autoimmune diseases. If your immunologist will not offer up monthly I can guess there are several reasons for this, one he normally does not treat autoimmune diseases, two insurance will not cover it, and three he is not a pandas expert. Find a b cell expert, rheumotologist immunologist that understands Cunningham antibrain antibodies, they have a much clearer understanding of autoimmune disease and ivig. WE HAVE BEEN SEARCHING on this forum for years for a protocol that works for our kids. What is interesting is for many autoimmune diseases above I mentioned, PEX works too, but the symptom remission usually doesn't last. Again, definately try the one ivig, especially with younger children, and if the child is in crisis, the higher the dose the better. They may go into remisssion, like many do. But for the older child like my dd whom has had three major attacks, I think this new protocol offers more symptom remission and less assault on her brain.

 

Eamom, Most of the families whom had trouble with ivig had lyme. Nancy D daughter, I am not sure her tough levels were sufficient to prevent a relapse, dosge and frequency are not always the same trough levels for each kid, it depends on their metabolism. My dd eats up the globins like crazy, some kids do, therefore one dose fits all make no sense. In the childrens hospital, there are immunologists whom function only in the Bone Marrow, Hemotology, Oncology divisions. My suggestion is find your leading immunologist in the division of your best childrens hospital. (Not allergy immunology division.) These docs turn on off flip around and manipulate the immune system with multiple drugs, b cells drugs, chemo, rituxan, and there safest protocol ivig. Have you ever run a b cell panel on your dd???? Dr. Sleasman in Florida sees overactivation of b cells in some of these kids presenting with ocd. One more peace of the puzzle. Its the politics behind the " pandas" word that limits our kids care, autoimmune disease is what they have. Some have a one time reaction, others have a chronic disease. I find it funny that you ask for studies about this protocol, Dr K had no studies, neither did Dr B, and Dr L only dosed my dd at 1 gram. Studies please.....

[EAMom]

Eamom, If the children have high antibodies attacking the body (Cunningham antibrain antibodies) then this is an autoimmune reaction. Triggered by something. Most likely something infectious.

 

Not necessarily. That "something" could be but the child's own brain tissue (open blood brain barrier). Because the blood brain barrier is open, and their immune system sees their brain as the "foreign/infection" perpetuating the inappropriate immune response.

 

(My other theory is that some of these kids do have residual low levels of strep hiding out in their systems.)

 

IMO, open blood brain barrier is enough to cause the problem in a PANDAS child, any infection on top of that just adds insult to injury.

 

 

 

 

In many of these kids they receive high dose ivig, and the cunningham tests go down but then they come back again, even without a strep trigger, maybe now just a viral trigger.

 

That is WHY we did IVIG in the first place, if strep were the only trigger, then antibiotics (theoretically) would solve the problem.

 

One gram per kilo gram is high dose, 1 gram to two grams is high dose ivig.

Okay, but for the purposes of PANDAS (to avoid confusion) I'm going to call high dose 1.5-2.0gm/kg. Even, if 1gm/kg is still "high dose" for other diseases, (I agree it is "high" vs. 0.4gm/kg), but it's confusing on a PANDAS forum to call 1gm/kg high dose (esp. if 1.5gm/kg is the "norm").

 

 

 

Every 21 days is the standard for ivig for autoimmune disease. Not every 28, this is for immune deficiencies.

 

That's fine. But I don't think we want to treat PANDAS just like any other autoimmune dz (or even immune def., unless we know that is also present). Esp. when there is a track record of children doing well with a higher dose and needing only 1 or 2 infusions (or perhaps every 6mo.)

 

WE HAVE BEEN SEARCHING on this forum for years for a protocol that works for our kids. What is interesting is for many autoimmune diseases above I mentioned, PEX works too, but the symptom remission usually doesn't last. Again, definately try the one ivig, especially with younger children, and if the child is in crisis, the higher the dose the better. They may go into remisssion, like many do. But for the older child like my dd whom has had three major attacks, I think this new protocol offers more symptom remission and less assault on her brain.

 

So have you tried 1.5-2.0gm/kg at least a couple of times (in conjunction with the appropriate antibiotics) and found it didn't work? ....and 1gm/kg every 21 days is more effective in your child's situation(and you are willing/able to do IVIG every 21 days along with blood draws every week). Then, I can't argue with your success.

 

 

My suggestion is find your leading immunologist in the division of your best childrens hospital.

 

That is who we worked with.

 

But realistically, for the majority of PANDAS parents who can't even get antibiotics, and have to fly to Chicago and struggle to pay out of pocket for 1 IVIG...I dont' think saying 1gm/kg every 21 days is "they way to go" since it's just not feasible for the the vast majority.

 

 

 

Dr K had no studies,

 

not yet.

Edited September 29, 2010 by EAMom

[nevergiveup]

Many kids continue to relapse, Eamom, and I believe each relapse can affect long term prognosis. I would definately try one ivig maybe even two, but if the child continues to decline, treating this as an autoimmune disease makes sense and there are many families whom have seen great success from this protocol. Not to mention an happier child. I again cannot emphasize enough, normal immunologists do not treat autoimmune disease, does your immune doc do bone marrow transplants, work with lupus kids and chemo kids? This is the type of immunologist I am talking about. One more thing, find me ONE infectious disease doc whom agrees panda kids have intracellular strep. These guys are the intracellular strep experts and I cannot find any to agree with this. This is the professionals whom discovered intracellular strep. We talk a whole lot about this on this forum without any legitimacy to this theory. Do you know how common strep throat is, reexposure is inevitable many times a year. The abx have been given to prevent strep and to be antiinflammatory. This intracellular strep stuff is not substantiated by any of our pandas experts. This is an autoimmune disease, and needs to be treated as such. Hence the steroids that work. Hence the relapse and remit course. Not an intracellular strep disease.