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Lectures S Swedo/PANDAS, Autism , OCD,etc.


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HI Listmates,

 

Here are many lectures very worthy of your time...

MIND Institute conference 11/06

Dr. Susan Swedo, Dr Green, etc few of many lecturers

 

http://www.ucdmc.ucdavis.edu/mindinstitute...ded_events.html

 

For PANDAS,,,,scroll to bottom about environmental toxicology

also the panel discussion is interesting in that group.

 

Mustang Carole

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Hi Mustang Carole,

 

Thanks for the link!

 

Wanted to add this too. It was nice reading the findings of several studies discussed in one place. I found the info under the PANDAS section interesting. One thing that caught my eye was the statement about the blood brain barrier normally being, I think they used the phrase, tight? So, what might be compromising this more now? Just one of several questions that this article brought to mind.

 

 

http://jcn.sagepub.com/cgi/reprint/21/8/678.pdf

 

Journal of Child Neurology

DOI: 10.1177/08830738060210080901

J Child Neurol 2006; 21; 678

Kendra Harris and Harvey S. Singer

Tic Disorders: Neural Circuits, Neurochemistry, and Neuroimmunology

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Thanks for the interesting and very needed lecture. I only wish more Dr. would read this especially the PANDAS section. Dr Sweedo was very informative and it all made so much sence. How did you ever find this? I will need to send it to all our Dr. I notice on the Azith she says it works maybe better then Pen. I wish someone would do a study onthe best prophylaxis for PANDAS. Plus she says the glucosimine is so important. I wish she spent more time on discussing the outcome and treatments! Thank you.

 

Michele

 

 

 

 

 

Hi Mustang Carole,

 

Thanks for the link!

 

Wanted to add this too. It was nice reading the findings of several studies discussed in one place. I found the info under the PANDAS section interesting. One thing that caught my eye was the statement about the blood brain barrier normally being, I think they used the phrase, tight? So, what might be compromising this more now? Just one of several questions that this article brought to mind.

 

 

http://jcn.sagepub.com/cgi/reprint/21/8/678.pdf

 

Journal of Child Neurology

DOI: 10.1177/08830738060210080901

J Child Neurol 2006; 21; 678

Kendra Harris and Harvey S. Singer

Tic Disorders: Neural Circuits, Neurochemistry, and Neuroimmunology

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That was one of the most interesting things I have listened to, in a long time.

 

I'm wondering how many parents will be having their kids come home from school and hold their arms out in front of them with their eyes closed!

 

I was amazed when she made them remark about other Dr.s saying "you're not buying into this, are you?" I wouldn't have thought that someone in her position would have to deal with the same thing we have all felt when dealing with many Dr.s!

 

Her remarks about not being able to replicate in animals was interesting, and the research that was done looking for a protein, when in fact it was a glycoprotein, too. It really helped shed a new light on the contradictory findings during different studies.

 

Michele, where did I miss the info about glucosimine?

 

I

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Sorry, I was trying to listen with four kids running and the Tv. Maybe glucoprotein was mistaken for glucosimine. I know it is listed as a treatment at NIMH so I just made the assumption this is what she was talking about. Is the glycoprotein related to the glucosimine? There was alot to absorb. I plan to listen again. Do you think the choriform movements come back with every episode? Andrew used to get them but not as much anymore. Now I figured the movements have become more pronounced with the finger bending.

Michele

 

 

That was one of the most interesting things I have listened to, in a long time.

 

I'm wondering how many parents will be having their kids come home from school and hold their arms out in front of them with their eyes closed!

 

I was amazed when she made them remark about other Dr.s saying "you're not buying into this, are you?" I wouldn't have thought that someone in her position would have to deal with the same thing we have all felt when dealing with many Dr.s!

 

Her remarks about not being able to replicate in animals was interesting, and the research that was done looking for a protein, when in fact it was a glycoprotein, too. It really helped shed a new light on the contradictory findings during different studies.

 

Michele, where did I miss the info about glucosimine?

 

I

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I just got off the phone with NIMH Dr. Sweedo's assistant. She will not say azith is better.They are done with the PANDAS studies at this time. She said to go by the information online Dr. Sweedo has published in journals. She said PITANDS is an old term they do not believe in it anymore. They seem to think PANDAS is overdiagnosed as it is not OCD and tourettes alone. It has to come right after a strep infection and cause a drastic change overnight in personality. In my son's case his initial strep brought it on but now he gets episodes when exposed to other viral things. She said the azith is not immune building but preventitive in getting strep. Some parents like it better because it is not given everyday. She did not say it works better but may work just as well. I heard they are doing a new study on Riluzole and Monocycline for autism.

 

Michele

 

Thanks so much Carole,

 

I too picked up on her comment that azith is as good if not better than pen. I do hope studies come out soon to help clarify that statement - so people can share that info with their doctors.

So nice to see you pop in. Hope things are well.

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Michele

 

just something re the azith...

From my understanding,it isnt supposed to be "immune building" ...but rather immune modulating, which, in autoimmune illness, is very different.....

so I can see why she would have said it isnt an immuno booster.

It is an immune modulator tho from what I have understood, and that is very helpful in autoimmune issues

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We see an ID clinic and they have talked about the immuno modulating effects of azith. The proof is in the pudding - we see dramatic improvements even with viral infections when we increase azith. If my son has increased tics that stick around for awhile - we give a 5 day course and by the third day tics are gone - this is a consistent result we have seen. Probably once every 3-4 months we give a round of azith - usually when others in the house have been sick with a viral illness.

We had the dramatic overnight onset, personality changes, handwriting, etc etc etc. Strep titers remained high, slowly coming down - PITANDS makes total sense to me - the strep titers remain elevated for my son so any attack on his immune system causes these already elevated antibodies to attack the brain.

I am quite surprised by the info the assistant is giving. I truly believe in PITANDS.

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I also wish there was more recent research to support PITANDS. I know my son gets episodes with viral exposure not just strep infections. I didn't know there was a difference between immune building and modulating. Thanks for the clarrification. She would not say Azith was good for more then preventitive. Maybe there will be more studies done to document its success with immune modulating effects. If enough patients are seeing its effects. I wish I could find a Dr. to try Azith for my son. Keep me posted.

Michele

 

 

We see an ID clinic and they have talked about the immuno modulating effects of azith. The proof is in the pudding - we see dramatic improvements even with viral infections when we increase azith. If my son has increased tics that stick around for awhile - we give a 5 day course and by the third day tics are gone - this is a consistent result we have seen. Probably once every 3-4 months we give a round of azith - usually when others in the house have been sick with a viral illness.

We had the dramatic overnight onset, personality changes, handwriting, etc etc etc. Strep titers remained high, slowly coming down - PITANDS makes total sense to me - the strep titers remain elevated for my son so any attack on his immune system causes these already elevated antibodies to attack the brain.

I am quick surprised by the info the assistant is giving. I truly believe in PITANDS.

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I still am not clear if we should try an boost the immune system with a PANDAS child or not. If the immune system attacking the wrong side is a problem, then why would we want to boost it? Has anyone tried immune boosters and ever had any tic reduction or improvements. Did it make it worse?

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Hi Mike

 

For PANDAS, boosting an already hyperactive immune system is not what one wants....modulating it is bringing it into balance, not boosting it

 

Usually, one wants a boosted immune system to help fight illness etc, BUT in autoimmune disease/disorders, where it already in hyper mode. one wants to keep it controlled....not dampened,like some drugs do, but modulated so that it functions correctly

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Just for discussion purposes, this is what I'm getting out of it.

 

When you get your first strep infection, it may take a long time to see the symptoms of PANDAS because the body is slow to mount an immune reponse, having h never delt with strep A. The immune system forms memory however, so with the second infection it recognizes the invader more quickly. Think of vaccinations. A baby gets dtap vaccine at 2 mos. and forms some antibodies, then, with the second injection at 4 mos. the body has "seen" the antigen before, and responds with more antibodies. By the third injection at 6 mos. the immune system has seen these antigens (what its contained in the vaccine..diptheria, acellular pertussis, tetanus) and recoginizes it even more quickly, and mounts the antibody response more quickly again. This is part of the TH2 arm of the immune system (forms memory to antigen), and why vaccines are given in series. An infant will not have what is considered full immunity after the first injection.

 

The problem with PANDAS and strep, is part of the brain, has a surface protein that resembles strep and the immune system gets confused, and the antibodies attack the brain instead of, or along with, the strep. This is the autoimmune response, or sometimes referred to as molecular mimickry(sp?) The only real way to avoid this is to prevent the strep infection to begin with, hence prophylatic antibiotics.

 

Did you notice where Dr. Swedo talks about the PANDAS reactions happpening more quickly with repeat infections? I think that the strep may loss the battle against the antibiotic, but if the immune system is sensing the brain surface as the threat, it keeps mounting the attack.

 

Bolstering the immune system, and keeping the body in as healthy of a state as possible, may help prevent the strep in the first place. I'm not sure that "boosting" would make a difference, in what the body is doing anyway, which is attacking the wrong thing. I can see where bolstering the immune system after the infection has occured, may not be a good idea. That is where the modulating effect may be helpful, in lesseing the TH2 response. Does that make sense to anyone??

 

Cheri, do you feel people with TS/tic disorders are more prone to autoimmune problems as a whole (type one diabetes, PANDAS, chrons etc.) Do you think there are certain supplements that should be avoided?

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