Does anyone have Swedos study on the 2 grams

[melanie]

Can someone foward the study to me If I show this info to our MD maybe she will change he opinion.She said she knows alll of sWEDOS WORKS i JUST WANT TO MAKE SURE

 

tHANKS

Melanie

[EAMom]

Here it is:

http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

Interestingly, Swedo never actually says "2gm/kg"...she always says "IVIG (1 g/kg daily on 2 consecutive

days)" .....which is of course 2gm/kg total , since 1+1=2!.

[Alex]

Can someone foward the study to me If I show this info to our MD maybe she will change he opinion.She said she knows alll of sWEDOS WORKS i JUST WANT TO MAKE SURE

 

tHANKS

Melanie

 

Melanie, here is the link to the study. http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

Also, you might try having Dr. Kavocevic talk to your MD. He convinced Dr. Bouboulis, an amazing immunologist, to switch his protocol from low dose monthly IVIG to higher dose less frequently after a conversation between the two. Also, he talked at length with our pediatrician to explain his protocol so I know he is more than willing to speak with fellow physicians concerning PANDAS and his enormous knowledge and experience on the topic All you would have to do is drop him a quick e-mail at DrK@webpediatrics.com to get the ball rolling. In our case, our pediatrician e-mailed, he responded within 24 hours and gave her all the information she needed to set up the IVIG.

 

Also, the conversation between Dr. K and Dr. Bouboulis was prompted by Dr. K becasue of all the calls he was getting from parents whose children were getting low dose monthly IVIG to no effect, so I know it is a topic he cares deeply about. Again, nobody on this forum can say for a fact what the absolute correct treatment is. I don't think most things in medicine are that clear cut. With that said, Dr. K has treated 500 plus PANDAS patients, and took a while and lots of research and application developing his protocol. E-mail him or have your doctor do it.

 

Good luck,

Alex

[nevergiveup]

Melanie,

 

Dr Swedo's study was a one time dose, (over two days, not monthly) maybe a second if the child relapsed again. Danny is getting one gram every 3 weeks, the donor antibodies have hardly died off before his next infusion. He may need this depending on his type of immune deficiency. I know the DAN protocols follow this type of monthly infusions and dosage. Maybe your immune docs knows more about Danny's specific needs.

 

I look forward to hearing what your immune doc says.

[melanie]

Can someone foward the study to me If I show this info to our MD maybe she will change he opinion.She said she knows alll of sWEDOS WORKS i JUST WANT TO MAKE SURE

 

tHANKS

Melanie

 

Melanie, here is the link to the study. http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

Also, you might try having Dr. Kavocevic talk to your MD. He convinced Dr. Bouboulis, an amazing immunologist, to switch his protocol from low dose monthly IVIG to higher dose less frequently after a conversation between the two. Also, he talked at length with our pediatrician to explain his protocol so I know he is more than willing to speak with fellow physicians concerning PANDAS and his enormous knowledge and experience on the topic All you would have to do is drop him a quick e-mail at DrK@webpediatrics.com to get the ball rolling. In our case, our pediatrician e-mailed, he responded within 24 hours and gave her all the information she needed to set up the IVIG.

 

Also, the conversation between Dr. K and Dr. Bouboulis was prompted by Dr. K becasue of all the calls he was getting from parents whose children were getting low dose monthly IVIG to no effect, so I know it is a topic he cares deeply about. Again, nobody on this forum can say for a fact what the absolute correct treatment is. I don't think most things in medicine are that clear cut. With that said, Dr. K has treated 500 plus PANDAS patients, and took a while and lots of research and application developing his protocol. E-mail him or have your doctor do it.

 

Good luck,

Alex

 

Is there any more recent .This study is from 1999 over 10 years ago.

For those of you being treated by her is she using the 2 grams I want to call his MD and speak about this but really need more than 1 study thats 10 yrs old.

 

Thanks for the paper it was good to read,

 

Melanie

[coco]

Melanie - this is THE study. This is the best data there is. Go with it.