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

[kim]

Mustang Carole or anyone interested in the ongoing research on thimerosal,

 

Did you listen to the Pessah lecture?

[kim]

Since the headline about thimerosal being safe once again, I wanted to post this artlce. I wonder why this didn't get headlines?

 

Gotta love that first sentence. I wonder what they DO consider a smoking gun?

 

http://www.speciation.net/Public/News/2006/03/24/2024.html

 

Although far from the smoking gun that proponents of a thimerosal-autism link seek, the finding suggested that thimerosal exposure could cause dendritic cells to activate "aberrant and harmful immune responses," according to Isaac N. Pessah, Ph.D., and colleagues of the University of California at Davis. They reported the research online in Environmental Health Perspectives.

[emma1]

As far as boosting the immune system, our doctor seemed to suggest that it was OK to give vitamins, etc., to get my PANDAS daughter as healthy as possible. My sister has thyroid issues, which is also an auto-immune issue. Her doctor has always advocated vitamins, probiotics, etc. for her as well. I am a little confused when you talk of immune boosting -- are you all talking about vitamins (like Bontech, etc., or OPC) and are you saying we do not want to get these kiddos as healthy as possible with supplements????? Anything specific we should avoid? I thought Dr. Murphy recommended fish oil?

[michele]

I've got to tell you this because it is so relevant. Dr. Gaines who is Dr. Murphy's assistant, laughed at me when I discussed the vaccine connection to my sons tics and PANDAS episodes. Also he seemed very against the entire DAN movement. He said basically there is a group of people out there who want to make a connection and want to think they have the answers but they have no basis to support it through research or documention. He said the body is very complex and little is known about the neurological system. Also he feels this group wants to say they know how to treat these symptoms but have no proof. He also laughed at the diet saying he felt it was a waiste of money and too restrictive. However when Dr. Murphy came in she did not have the same beliefs because she told me to make sure if I gave the flu shot to make sure it did not have Mercury or thermosal. She also felt the diet was fine if I thought it was helping. She especially suggested the Gluten free over the casein free. Interesting!

Michele

 

 

 

Since the headline about thimerosal being safe once again, I wanted to post this artlce. I wonder why this didn't get headlines?

 

Gotta love that first sentence. I wonder what they DO consider a smoking gun?

 

http://www.speciation.net/Public/News/2006/03/24/2024.html

 

Although far from the smoking gun that proponents of a thimerosal-autism link seek, the finding suggested that thimerosal exposure could cause dendritic cells to activate "aberrant and harmful immune responses," according to Isaac N. Pessah, Ph.D., and colleagues of the University of California at Davis. They reported the research online in Environmental Health Perspectives.

[kim]

michele,

 

Please see response under "explode" thread

[pl4]

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.

 

Michele,

my son also had his firsr reaction with strep and since he is also reacting to any simple common colds or virus. Do you know any more information regarding this. I just assume anything that decreases his immune response may trigger his OCD !!!!!

Thanks

[michele]

Hi. I recently talked to a young college student who got PANDAS in fourth grade. She also had worsening in symptoms during illness and still does get them during periods and sickness not only strep. My son now gets worse with exposure to people who are ill. I think you are right. Immune system is down antibodies are up That launches the brain attack. It is very scary. This causes inflamation on the brain. That means he is having more episodes. Knock on wood he hasn't been sick other then a runny nose this fall. His symptoms were bad at times though. We now have the ticcing under control. I think the nystatin may have helped and the taurine and zinc. He still gets obsessed about topics and stuck on ideas. It is not as bad though. I may try the 5HTP or COQU10 for the compulsions. Monolaurin seems to help with his immunity too. Evertime he gets a stronger antibiotic like omniseph his behaviors improve greatly. My son is having motor delays fine and gross so we are doing OT once a week and trying for a school IEP. What's happening in your case?

Michele

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.

 

Michele,

my son also had his firsr reaction with strep and since he is also reacting to any simple common colds or virus. Do you know any more information regarding this. I just assume anything that decreases his immune response may trigger his OCD !!!!!

Thanks

[bmom]

Michelle, Would you say your son is much better after doing the treatments or a little? Did he improve quite a bit after Nystatin and has remained improved? What was the time frame- He began Nystatin and 2 weeks later he was much improved? Thanks for the info. Also do you consider your son to fit under PANDAS only? How about you PL4?

[michele]

I think nystatin helps with the gut issue which leads to ocd and compulsiveness if not treated. I think his cracking and peeing is a compulsive behavior. My sons symptoms erupt with exposure to virals and strep so I believe it falls under the Pandas umbrella. I have not found Dr's using the PITANDS term anymore. I found Chemar's comments on the other thread about the neurological and microbial research very interesting. I know the Dr. Murphy told me the neurological system is the least understood system of the body. The nystatin only works temporarily. If I have him take 1 tsp every other day he begins symptoms on the day he is due the meds. He hates the taste and it is hard to get it down him. He really should get it everyday. Possibly we should try the pill form. What is PL4? Is that a school IEP plan?

 

He had a fit at the mall yesterday after OT theraphy. He still has some bad days. He was just flying high yesterday, talks nonstop. Like last week he kicked a friend on the bus over a disagreement. It is like there is a switch and he just looses it. This could be the ADHD coming out. We definately fit every criteria in the diagnosis for PANDAS. I think the Zinc also helps and the taurine with the rowdy guys. I am sure we have a long and sometimes winding road ahead of us.

Michele

Michelle, Would you say your son is much better after doing the treatments or a little? Did he improve quite a bit after Nystatin and has remained improved? What was the time frame- He began Nystatin and 2 weeks later he was much improved? Thanks for the info. Also do you consider your son to fit under PANDAS only? How about you PL4?

[Chemar]

just a reminder that we have had reports that some people react badly to Nystatin, which is a prescription drug.

 

there are other alternative treatments for candida available, like candida clear by NOW, which contains capryllic acid, or Threelac

[michele]

Also isn't MCT oil a nonprescription supplement used for yeast?

Michele

just a reminder that we have had reports that some people react badly to Nystatin, which is a prescription drug.

 

there are other alternative treatments for candida available, like candida clear by NOW, which contains capryllic acid, or Threelac

[Dedee]

I also just absolutely loved this lecture and am so glad that it was posted. I saw it a while back and have tried to down load it to a disc to give to my pediatrician but can't get it done. I think it is worthy of every physician accross the nation seeing. Maybe then we would be taken more seriously. I fear that it will be years before PANDAS will be recognized and respected as a "real" disease. I have said it before and I will say it again; health care providers (I can say this, because I am one), just do not want to think "outside the box", and try to understand things that do not fit into a specific mold. And since PANDAS is so varied in each child, and doesn't always present the same, it is easier to dismiss it as bogus. You would think that health care would be more open minded, but in reality it is just the oposite. You either have conventional doctors who generally think only in "cook-book" type medicine, or you have to search out a research type or non-conventional physician who can think in a more "open minded" manner. Thankfully, there are also a blessed few who fall in the middle of that spectrum that have been able to help some of us out. Sorry, to get on another soap box. I'll step down now. Have a good day everyone.

 

Dedee