My views on the Cunningham test

[kimballot]

As for PANDAS vs PITAND, I think right now they are being used almost interchangeably. I would think PANDAS is a subgroup of PITANDS, but PANDAS got more known now due to Swedo concentrating on that. Again, I can look up the history Buster posted in the pinned thread. There is the whole debate if the whole thing should just get renamed to PAND, but who knows what will happen.

 

Thanks - That is helpful. I like the PAND idea, but it does not convey the unevenness of the symptoms based on infection status. We'll see what evolves!

[sf_mom]

I've got very strong opinions here BUT I say.... Its the infection that is the root cause and the immunodeficiency is the result of that particular infection. Immune system finally caves. My son had never been on any antibiotics prior to his first TIC and that was six months post exposure to RF/Kawasaki's. We have too many kids not genetically related that are now PANDAS. Is our situation an isolated 'cluster'? Why would your son have similar deficiencies........ all questions to be answered by 2026.

 

I believe it is the age and state of immune system at time of exposure. Kawasaki's effects children under the age of five.

 

Here is an article that talks about the lack of humoral response to the S. pyogenes that I've posted many times.

 

Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

[thereishope]

What's going on that would give us answers by 2026?

 

 

all questions to be answered by 2026.

[Dr_Rosario_Trifiletti]

I've got very strong opinions here BUT I say.... Its the infection that is the root cause and the immunodeficiency is the result of that particular infection. Immune system finally caves. My son had never been on any antibiotics prior to his first TIC and that was six months post exposure to RF/Kawasaki's. We have too many kids not genetically related that are now PANDAS. Is our situation an isolated 'cluster'? Why would your son have similar deficiencies........ all questions to be answered by 2026.

 

I believe it is the age and state of immune system at time of exposure. Kawasaki's effects children under the age of five.

 

Here is an article that talks about the lack of humoral response to the S. pyogenes that I've posted many times.

 

Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

I agree, early strep infections seem to do something profound to the immune system, that's perhaps why they seem to "kindle" the development of other infections. The infection is the root cause, and early on at least the infection is frequently strep. Then, the triggers tend to blur into one another. So the best time to try to cure PANDAS is very early on. This is where we most often see the "one pill wonder cures" where one dose of zithromax totally cures a tic disorder. Once persistent infection after persistent infection begin piling on, cure is still very possible, but sometimes harder to achieve. The theme of co-infection is usually very important in the older (>10 y.o.) child with the PANDAS-like picture.

 

It will be most important then, in any education campaign, to let parents and docs know about the early signs of strep infection (the compulsive urination, etc), just as is done in autism.

 

Dr. T

[ajcire]

I know that when my ds was 2 and started the constant eye blink...all of a sudden one day it was like just non stop all day... and the dr. told me it was a common childhood tic and it would likely come in spurts where it would be a lot and then I wouldn't see it for a while and it would probably come back and he would likely outgrow it... Obviously I now kick myself that I didn't ask but why? Why would it come and go... what would cause this but rather left the office feeling relieved that there was nothing really wrong... ha. Obviously now, knowing what I know.... I would have done things much differently. Until this becomes so common that it's in all those parenting books that new parents flock to or until peds stop calling it normal childhood tics people are not going to catch it at the beginning. I have a practice that has 5 peds in it... and out of the 5... only one of them is up for being educated... the rest are hearing what they want to hear with this.

 

 

 

I've got very strong opinions here BUT I say.... Its the infection that is the root cause and the immunodeficiency is the result of that particular infection. Immune system finally caves. My son had never been on any antibiotics prior to his first TIC and that was six months post exposure to RF/Kawasaki's. We have too many kids not genetically related that are now PANDAS. Is our situation an isolated 'cluster'? Why would your son have similar deficiencies........ all questions to be answered by 2026.

 

I believe it is the age and state of immune system at time of exposure. Kawasaki's effects children under the age of five.

 

Here is an article that talks about the lack of humoral response to the S. pyogenes that I've posted many times.

 

Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

I agree, early strep infections seem to do something profound to the immune system, that's perhaps why they seem to "kindle" the development of other infections. The infection is the root cause, and early on at least the infection is frequently strep. Then, the triggers tend to blur into one another. So the best time to try to cure PANDAS is very early on. This is where we most often see the "one pill wonder cures" where one dose of zithromax totally cures a tic disorder. Once persistent infection after persistent infection begin piling on, cure is still very possible, but sometimes harder to achieve. The theme of co-infection is usually very important in the older (>10 y.o.) child with the PANDAS-like picture.

 

It will be most important then, in any education campaign, to let parents and docs know about the early signs of strep infection (the compulsive urination, etc), just as is done in autism.

 

Dr. T

[sf_mom]

OK, this is kind of funny...... I heard some prophet or psychic at some point in my life, I can't remember, say that mental illness will have a cure by 2026. Its become a standing joke with Diana P and me. AND, actually when you think about it in 16 years they might solve the debate and know the 'root cause'. Thankfully, they are able to now treat without knowing ALL of the pathogens.

 

-Wendy

[colleenrn]

That is very interesting.

 

I actually believe that some day we will find that bacteria/viruses/etc.. are the main causes of all psychiatric illnesses.

Any thoughts?

 

Colleen

[Megs_Mom]

That is very interesting.

 

I actually believe that some day we will find that bacteria/viruses/etc.. are the main causes of all psychiatric illnesses.

Any thoughts?

 

Colleen

 

100% agree. Not all, but most is a fair guess. I was shocked while reviewing literature to see that Schizophrenia is suspected to be caused by a Bacteria as well. Toxoplasma gondii. If you have not read "Infected with Insanity" - article in Scientific American, I'd strongly recommend. I don't have the link handy, but I'm sure someone here will post!!!

[colleenrn]

I know someone whose son has been extremely ill with schizophrenia for 20 years. He is a long time friend of my dad and I was listening to him talk about his son. I satrted wondering in my "Mommy PANDA head", "gee, I wonder if it could be at all related to strep", b/c I have been on that "kick" for many a year. He then floored me when he casually mentioned that his son had "lots of illnesses" when it started. Physical and bacterial illnesses.

 

 

Coincidence? I don't think so, but we will see, hopefully sooner than later.

Colleen

[momto2pandas]

That's all great about the early cures...but where does that leave those of us that are already into this vicious cycle of infection causing immune dysfunction causing more infection? I've felt pretty comforted for a while by the fact that my kids' PANDAS is subtle... but now that I see how messed up their immune systems are by these chronic infections that seem to get increasingly intractable, I'm worried about all of the other effects the infections may be having...or may come to have if the boys get exposed to something worse than they have had so far. Ds6 says that breathing is hard at times - thought it was a touch of anxiety or asthma, but could it even be bronchiectasis from these chronic infections? His doctors have never really investigated it. Ds3's speech clarity isn't progressing the way it should be (despite his language >90th percentile) - speech pathologist yesterday says she thinks it's neurological. Is the infection doing this, too, or is the inflammation interfering with his hearing? And what about the heart murmur that comes and goes? Seems likely this is all related.

 

It also does make me worry about more PANDAS in the future. But where to begin?

 

 

 

I've got very strong opinions here BUT I say.... Its the infection that is the root cause and the immunodeficiency is the result of that particular infection. Immune system finally caves. My son had never been on any antibiotics prior to his first TIC and that was six months post exposure to RF/Kawasaki's. We have too many kids not genetically related that are now PANDAS. Is our situation an isolated 'cluster'? Why would your son have similar deficiencies........ all questions to be answered by 2026.

 

I believe it is the age and state of immune system at time of exposure. Kawasaki's effects children under the age of five.

 

Here is an article that talks about the lack of humoral response to the S. pyogenes that I've posted many times.

 

Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

I agree, early strep infections seem to do something profound to the immune system, that's perhaps why they seem to "kindle" the development of other infections. The infection is the root cause, and early on at least the infection is frequently strep. Then, the triggers tend to blur into one another. So the best time to try to cure PANDAS is very early on. This is where we most often see the "one pill wonder cures" where one dose of zithromax totally cures a tic disorder. Once persistent infection after persistent infection begin piling on, cure is still very possible, but sometimes harder to achieve. The theme of co-infection is usually very important in the older (>10 y.o.) child with the PANDAS-like picture.

 

It will be most important then, in any education campaign, to let parents and docs know about the early signs of strep infection (the compulsive urination, etc), just as is done in autism.

 

Dr. T

[amy s]

That is very interesting.

 

I actually believe that some day we will find that bacteria/viruses/etc.. are the main causes of all psychiatric illnesses.

Any thoughts?

 

Colleen

 

I totally agree, ....

 

bacteria/viruses and what about severe vitamin deficiency (which---given how we know viruses work, the deficiency could be caused from bacteria/viruses-!!!)

 

Just google vitamin mega doses and schitzophrenia or vitamin deficiency and schitzophrenia. A lot of people are talking about this now. Some are apparently disproven, but these days I don't discount anything. I have seen some amazing things happen in adults once vitamin/mineral were stabilized.

 

(please if you are a parent looking for help for your pandas child, do not just independantly begin a vitamin mega dose without a physician's guidance- some vitamin over doses can cause severe problems....google 'vitamin overdose' for some examples)

[nomoz]

How many children, if not all, are exposed to strep, or are even carriers, early on in their development? It's the distinction between those who develop PANDAS symptoms versus those who do not that is baffling, and I'm certain at the heart of understanding the illness better. I believe there is a link here with Autism, but so much is still a mystery about the causal factor in both illnesses. There absolutely has to be an environmental trigger, perhaps coupled with a genetic predisposition (but I don't buy that, necessarily,since how could genetics have erupted into an epidemic?). Something we are doing every day is screwing up our immune systems, and we are passing it on to our kids. What is it? Radioactivity? Plastic? Immunizations? Overprescribed anti-depressant/other meds in parents? What IS it? Once not only the trigger is revealed, but the "cause" for the trigger to act is revealed, therein lies the answer, I think..

[thereishope]

I'm glad you clarified that! The way this forum likes to run with things, in a week you'd check back and there would be rumors about a study whose findings will come out then. We all tend to jump the gun sometimes on here!

 

Let's see...2026....our kids will be adults by then and a lot of them a super smart. Maybe one of them will find the cure!

 

 

OK, this is kind of funny...... I heard some prophet or psychic at some point in my life, I can't remember, say that mental illness will have a cure by 2026. Its become a standing joke with Diana P and me. AND, actually when you think about it in 16 years they might solve the debate and know the 'root cause'. Thankfully, they are able to now treat without knowing ALL of the pathogens.

 

-Wendy

[thereishope]

I'm thinking that too. And the bacteria, virus, etc may be exposed prenatally as well, not just as an infant, child, etc.

 

 

 

That is very interesting.

 

I actually believe that some day we will find that bacteria/viruses/etc.. are the main causes of all psychiatric illnesses.

Any thoughts?

 

Colleen

[thereishope]

In reference to specifically schiz... Did anyone else read that Scientific American Article that was posted a bit ago? "Infected with Insanity"? It listed that schiz.. can be caused by the flu! Even if the mother had the flu while pregnant or received the flu vaccine while pregnant .

 

That is very interesting.

 

I actually believe that some day we will find that bacteria/viruses/etc.. are the main causes of all psychiatric illnesses.

Any thoughts?

 

Colleen

 

I totally agree, ....

 

bacteria/viruses and what about severe vitamin deficiency (which---given how we know viruses work, the deficiency could be caused from bacteria/viruses-!!!)

 

Just google vitamin mega doses and schitzophrenia or vitamin deficiency and schitzophrenia. A lot of people are talking about this now. Some are apparently disproven, but these days I don't discount anything. I have seen some amazing things happen in adults once vitamin/mineral were stabilized.

 

(please if you are a parent looking for help for your pandas child, do not just independantly begin a vitamin mega dose without a physician's guidance- some vitamin over doses can cause severe problems....google 'vitamin overdose' for some examples)