"NIMH's Insel Needs a Lesson on PANDAS, PANS..."

[mama2alex]

Interesting food for thought...

 

http://www.ageofautism.com/2012/04/nimhs-insel-needs-a-lesson-on-pandas-pans-paresis-and-autism.html

 

Here's Insel's original blog post which inspired the AoA blog post: http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-pans.shtml

[PowPow]

Maybe I am missing the point of the AOA post, or maybe the point of the title. I am very grateful to Dr. Insel for his open mindedness and willingness to write about our kids.

 

Edited for my terrible typing skills;)

Edited May 3, 2012 by PowPow

[LNN]

I have to agree with PowPow. I'm grateful that someone with the authority of the NIMH is willing to re-frame mental illness as just "illness" and challenge conventional thinking about infection.

 

I have my concerns about vaccinations and support a middle ground of calling for screening - look for what makes some kids more susceptible to potential harm instead of insisting that all kids be treated - and vaccinated - the same (or that no kid should ever be vaccinated ever). I am against combo vaccines and the insane number of vaccinations given to babies and toddlers. But I am also grateful that I'll never know the fear that my child could be crippled by polio. I am against concocted "needs" and will not get my DD vaccinated with guardasil. But I don't much care for this essay's attempt to tie Pandas with mercury. There are kids on this forum who haven't been vaccinated and still have Pandas. Kids who have been vaccinated and went a long period of time with no adverse response.

 

Do I think vaccines could play a role in causing trouble for a subset of the population? Yes. But I don't see the need to tie Pandas to mercury. Plenty of vaccines use other potentially harmful preservatives beyond mercury. Plenty of other issues (poor methylation, nutritional deficiencies, genetics) are at play.

 

I read on another site that Pandas is becoming accepted because big pharma is seeing a way to promote expensive treatments and make money. Why does it feel like the Pandas cause is in a catch-22. If it becomes accepted, which is still a long way off, then other causes seem ready to denounce whatever treatments become available or try to link Pandas with causes such as mercury. Is mercury a bad thing? Absolutely. But do all Pandas kids have a mercury problem? To make this leap feels like a big stretch. And I kinda resent having my kids' disease hijacked and dragged into this argument when there's nothing concrete to suggest it's a valid link. JMHO.

Edited May 3, 2012 by LLM

[peglem]

This from the Insel piece:

 

It is testing intravenous immunoglobulin (IVIG) for OCD symptoms in PANDAS. IVIG, an infusion of normal antibodies, restores normal immune function by neutralizing errant antibodies.

 

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help.

[Kiera]

I do believe this is how ivig works. I know they're not sure exactly how, but I believe ivig floods the blood system with good antibodies thereby making the bad antibodies diluted and they loose their potency and destructive effects. My brother got treated with ivig for myasthenia gravis, another autoimmune reaction where the bad antibodies attack the receptors in the neuromuscular junction in the throat and eyes. He recovered tremendously post ivig. I guess it's like anything that's diluted looses it's strength?

[JAG10]

This from the Insel piece:

 

It is testing intravenous immunoglobulin (IVIG) for OCD symptoms in PANDAS. IVIG, an infusion of normal antibodies, restores normal immune function by neutralizing errant antibodies.

 

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help.

 

I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies."

 

IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done.

[peglem]

This from the Insel piece:

 

It is testing intravenous immunoglobulin (IVIG) for OCD symptoms in PANDAS. IVIG, an infusion of normal antibodies, restores normal immune function by neutralizing errant antibodies.

 

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help.

 

I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies."

 

IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done.

So, if IVIG does not restore "normal immune function" does that mean that there is some other immune system problem? My daughter gets IVIG every 3 weeks (1.5g/kg) and we do see immediate improvements- by the time the next IVIG is due we start regressing again. So, while it does seem like the auto-antibodies are some how edged out by the IVIG, they rapidly return once the dono-globulins begin to wane.

[LaurenK]

This from the Insel piece:

 

It is testing intravenous immunoglobulin (IVIG) for OCD symptoms in PANDAS. IVIG, an infusion of normal antibodies, restores normal immune function by neutralizing errant antibodies.

 

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help.

 

I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies."

 

IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done.

So, if IVIG does not restore "normal immune function" does that mean that there is some other immune system problem? My daughter gets IVIG every 3 weeks (1.5g/kg) and we do see immediate improvements- by the time the next IVIG is due we start regressing again. So, while it does seem like the auto-antibodies are some how edged out by the IVIG, they rapidly return once the dono-globulins begin to wane.

 

Maybe your daughter still has an active infection?

[peglem]

This from the Insel piece:

 

It is testing intravenous immunoglobulin (IVIG) for OCD symptoms in PANDAS. IVIG, an infusion of normal antibodies, restores normal immune function by neutralizing errant antibodies.

 

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help.

 

I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies."

 

IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done.

So, if IVIG does not restore "normal immune function" does that mean that there is some other immune system problem? My daughter gets IVIG every 3 weeks (1.5g/kg) and we do see immediate improvements- by the time the next IVIG is due we start regressing again. So, while it does seem like the auto-antibodies are some how edged out by the IVIG, they rapidly return once the dono-globulins begin to wane.

 

Maybe your daughter still has an active infection?

I'm not sure what "active" infection means. She still has frequent positivity for strep- but only on the rapid. She is currently being treated for a UTI, which was dx'd through 3 day culture- the dip was neg. But, there does seem to be something that is kept at a simmer w/ proph. zith and then flares every so often. I suspect its a sinus thing because it presents with photophobia and migraine. Treatment w/ clindamycin takes away those symptoms, until next time... We have turned her sinuses inside out looking for the culprit, but have found nothing.

[Orion]

This from the Insel piece:

 

It is testing intravenous immunoglobulin (IVIG) for OCD symptoms in PANDAS. IVIG, an infusion of normal antibodies, restores normal immune function by neutralizing errant antibodies.

 

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help.

 

I was the one who said this in a different post. This is how our Yale neurologist explained it to us. He has had journal articles published and also presented at AAN conference on some of his research with IVIg. So, for me at least, this does hold water - until the next new discovery comes about and everything changes yet again.

 

We are also dealing with PANS via Lyme, not strep, how much that changes the equation, I don't know- not sure if anyone really does.

[kimballot]

This from the Insel piece:

 

It is testing intravenous immunoglobulin (IVIG) for OCD symptoms in PANDAS. IVIG, an infusion of normal antibodies, restores normal immune function by neutralizing errant antibodies.

 

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help.

 

I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies."

 

IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done.

So, if IVIG does not restore "normal immune function" does that mean that there is some other immune system problem? My daughter gets IVIG every 3 weeks (1.5g/kg) and we do see immediate improvements- by the time the next IVIG is due we start regressing again. So, while it does seem like the auto-antibodies are some how edged out by the IVIG, they rapidly return once the dono-globulins begin to wane.

 

My understanding is that IVIG likely does a number of things - which is why our kids seem to benefit from different dosages and different frequencies.

 

1. Swedo explained in one of her videos that it is thought that the good antibodies in IVIG complex with the auto antibodies that the child is producing to de activate the auto antibody and make an immune complex, which is removed by the body. This was a little confusing for me, because typically, immune complexes are an antigen (ex: strep or mycoplasma molecule) and an antibody combined. But.. in the case of autoantibodies and IVIG, the thought is that the donor antibodies complex with the auto antibodies. Dr. B told me that immune complexes that cannot be absorbed by the body quickly are deposited in joints and organs such as the kidneys (hence the joint pain our kids get with infections)... and he postulated to me that this may be why we see a temporary increase in symptoms (turning back the pages) after IVIG - while the body is removing these complexes, as some may have deposited in the brain. (I think this is hypothesis only at this point).

 

2. Some studies have shown that higher dosages of IVIG are also anti inflammatory - so HDIVIG (1.5-2 g/ kilo) is likely also reducing inflammation, and closing the blood - brain barrier - so the antibodies cannot cross over to the brain to start the aut immune process again.

 

So .... in kids who may have had strep or another infection that has been TREATED and has ENDED, but who are continuing to have an auto immune PANDAS / PANS exacerbation - it makes sense that a one-time HDIVIG could stop the autoimmune process - or "neutralize" the errant antibodies and restore normal function.

 

However... If the child either continues to have an infection (ex: lyme, hidden strep, ongoing mycoplasma) OR if the child is reinfected (exposure to strep, walking pneumonia, etc)... well then the body will have make new antibodies and will have inflammation .. which will lead to a breach in the blood-brain barrier and will start the process all over again!

 

3. In addition - many of our children are immune deficient to some selective antibodies, so they are on repeated IVIG to prevent infection - thereby preventing the whole cycle from starting again.

 

Does that make sense? Of course - much of this is hypothesis and I think this is what everyone is trying to figure out with the current research.

[Ozimum]

The whole mercury/vaccine issue is so murky, I can understand why people dont want to muddy the waters around PANs. When my son was diagnosed with Aspergers at age 16 (sudden onset yeah right!), I turned to a Biomed doctor (best thing we did) who then diagnosed PANDAS. Needless to say I became an internet junkie and I read lots of things including the debate over vaccines - very little of which I could form an opinion about one way or another. Im still sceptical but also open.

 

I am at a loss to explain why my son was struck down with this PANDAS #@#% and I struggle every day to develop a coherent hypothesis. My son is 18 and fully vaccinated ( and Im not at all sure I would do it the same way again…perhaps Id do single vaccinations and space them out…or maybe Id consider homeopathic alternatives.) Thiomersal was removed from childhood vaccinations in Australia in 2000 (except for HepB), so he got it his early vaccs.

 

But apart from vaccinations its possible to be exposed to mercury in other ways For instance, Ive broken a few mercury thermometers in my time and I also remember delighting in the properties of mercury and actually handling the stuff as a kid in science class (hopefully that wouldnt happen today!) Eating a diet high in fish is also a risk factor for mercury, and so too eating fish downstream from gold mining areas I can tick that box. And Ive heard that its possible for mothers to dump mercury into their kids (thats according to my naturopath Im not sure whether thats in utero or through breast milk or both something to research sometime! I really dont want to add to my guilt just yet!)

 

Last year some researchers here published the following article: Ancestry of pink disease (infantile acrodynia) identified as a risk factor for autism spectrum disorders by Shandley K, and Austin DW. http://www.ncbi.nlm.nih.gov/pubmed/21797771 Shandley and Austin studied a cohort of grandchildren of sufferers of pink disease (caused by exposure to mercury in a teething product) and found that they have a 1 in 22 incidence of Autism compared to the Australian average of 1 in 160, and they argue the results support the hypothesis that Hg sensitivity may be a heritable/genetic risk factor for ASD.

 

So Im left with a bunch of questions…does exposure to heavy metals like mercury really have the capacity to affect genes in future generations? Is this cohort of grandchildren of sufferers of pink disease proof of epigenetics at work? Does exposure to mercury (or other heavy metals) mean that a gene was turned off or on, making our kids more susceptible to Autism, and messing with how their bodies function? If Autism is indeed infection based as suggested, is it too far a stretch that epigenetics could also have a role in our kids being more sensitive to infections such as strep?

 

I really dunno… I still dont know if my son is on the spectrum or has PANDAS alone. Clearly, I dont have answers, but I will keep asking questions until I die and right now I think it is pertinent to continue to ask questions about mercury.

Edited May 3, 2012 by Ozimum