This Is MS Multiple Sclerosis Knowledge & Support Community

Hi, everybody was just wondering if there has been any news from the pediatric study and trial of Dr. Weinstock Guttman? I have a 14 year old son diagnosed with M.S. in September of this year. First episode was in March of 2010 wich presented with ataxia and nystagmus. MRI in March showed multiple leisions. 5 days of IV steroids brought him back 100% 2nd MRI in June showed no new leisions and old leisions were almost absent (Good News) at that time. The 3rd MRI showed a new leision and thus the diagnosis. He is 100% at this time and is active with his older brother in High School baseball. Since then we had consulted with a Nuero in Tampa Dr. Krolczyk at USF, a great doctor. We are from Fort Myers Fla. We go and see Dr. Krolczyk in March hoping he has heard how the pediatric trials are going.
I was also wondering if anybody has heard of young children under 18 being tested and treated for CCSVI? Feel free to pm me if you would like or E-mail at jbfmsfd@aol.com. I have been a member since my sons episode and read the posts everyday, I have gained a wealth of info from this site and do so everyday.
Thanks Jimmy.

Jimmy

I do not have any direct info on Dr. Weinstock Guttman's testing for CCSVI in the pediatric population.

However, Hollie's Notes from Ectrims 2010

contain this statement:

Dr. Zivadinov gave an overview of his research results to date. CCSVI has been found more often in MS cases than in people with other neurological diseases, and more often in people with a first MS-like symptom (clinically isolated syndrome or CIS) than in healthy controls. There is no difference in CCSVI frequency in adults vs. children.

Hollie has been with the Accelerated Cure Project for many years and personally I think she's a very reliable "reporter".

Not much info really but it does seem like CCSVI is present in the pediatric population.

All the best to you and your son. Please let us know if/when you learn more. Thanks!

Sharon

Thank's Sharon. Will let ya know if I find any more info.

E. Ann Yeh, MD, UB assistant professor of neurology and a major collaborator on the study, noted that of the 10 pediatric MS patients who participated in the study, five presented with CCSVI (50 percent), yielding prevalence similar to that in adult MS patients.

"Although the sample size was too small to draw any firm conclusions, these results suggest that CCSVI is also present in children and is not the result of aging," she says.

http://www.buffalo.edu/news/12469

Thank's CeCe. I thought their were more children involved in the study.

Had a appt. in March with our Nuero in Tampa at USF (Very involved with CCSVI). My son's recent MRI showed no new enhancing leisions and old leisions were barely noticable. He has had no issues since his first attack (very happy). We are in the process of getting him tested in Tampa also. Right now keeping up with the news,updates of the Dr's doing the procedures. Thank's CeCe for all the research and updates you find for all the TIMS readers.

Jimmy.

jimmy - I hope all continues to go well . There is a boatload of exciting encouraging CCSVI-MS information to be had here at TIMS.

There are some superb medical professionals hard at work ..... looking to help pwMS. Some of the results of their efforts ..... are amazing.

All the Best for you .....



Mr. Success