Sammy in the News

[L Haven]

Wow - Sammy's story is on the aol main page! "Determined Mom Saves Teen's Life . . . "

[T_Mom]

Wow - Sammy's story is on the aol main page! "Determined Mom Saves Teen's Life . . . "

 

Hallelujah!

[thereishope]

Here's a link to the article....

 

http://www.aolhealth.com/health/caregiver-...ulsive-disorder

[ajcire]

I started to read the comments below that article and quickly changed my mind!

[dut]

I also began reading the comments but stopped once my blood pressure went thru the roof.. just too depressing.. I could vent but hey.....

[thereishope]

Just so you know AOL comments have always been like that regardless of topic. You need to ignore them. I think most peole who click on the topic on AOL know not to take the comments seriously. Read the article and go on....

[ShaesMom]

Here's a link to the article....

 

http://www.aolhealth.com/health/caregiver-...ulsive-disorder

 

 

Here's an excerpt from part of that article:

 

As many as 10 percent of children with OCD may actually have PANDAS, says Paul Grant, M.D., a child psychiatrist in the institute’s pediatrics and developmental neuroscience branch.

 

But not everyone is convinced that strep is responsible for these kids’ compulsive behaviors. Because strep is so common in children, it’s tough to prove that it’s related to OCD and Tourette’s, says Stanford Shulman, M.D., head of infectious disease at Children’s Memorial Hospital in Chicago. And, he adds, studies haven’t shown that taking antibiotics long-term reduces compulsive behaviors any more than swallowing a placebo. “There’s an awful lot of emotion involved in this controversy and debate,” Shulman says. “It is very upsetting and in the worse cases, a disruptive illness. But in medicine, before we conclude A causes B, there needs to be scientific evidence. People have really tried and it’s still lacking.”

 

Grant says that could change once scientists definitively identify a PANDAS antibody and find a blood test for it. “Until a test is readily available, we won’t have enough cases to say this is unequivocally true,” he says.

I think everyone on this board needs to send Mr. Grant an email telling him about their child and experience with Pandas. I'm getting sick of hearing that there isn't enough evidence out there to justify Pandas as a real dx. MY CHILD IS ENOUGH EVIDENCE-as is everyone else's on this board. We need to start flooding email boxes so they no longer have an excuse to pretend that we do not exist!

 

I'm sending Mr. Grant an email today and I'm asking you to do the same:

 

PaulGrant@mail.nih.gov

[thereishope]

Will do!

 

 

I'm sending Mr. Grant an email today and I'm asking you to do the same:

 

PaulGrant@mail.nih.gov

[EAMom]

Hey everyone...check out the 2 comments from Richchek on Sept 27 10:53 and 10:48 (it's a little ways back in the comments). He is a pediatrician and his dd has PANDAS...she's been on antibiotics for 10 years. She was originally evaluated/diagnosed at NIH. I don't know if there is a way to send him a msg...I guess we could post something and hope he sees it (but not all of the weirdos on aol!).

[michele]

Dr. Paul Grant is the lead researcher Dr. on the study at NIMH that Dr. Latimer wanted us to do on the use of Riluzule on anxiety disorders. They keep calling me but want us 11 times in nine months which is alot of traveling from OH to MD. They won't pay for more then two of us either and I have a two year old I really can't leave because of childcare. Also you can not change meds during the study, not even dosage. We have not been stable yet with meds we are constantly tweaking the dosage. Another thing you can get a placebo for the first 12 weeks, everyone gets the med the second twelve weeks. Also you have to have your local psychiatrist on board. Anyone here doing the study?

 

http://www.clinicaltrials.gov/show/NCT00251303

Will do!

 

 

I'm sending Mr. Grant an email today and I'm asking you to do the same:

 

PaulGrant@mail.nih.gov

[EAMom]

Is that the one that NancyD's dd did?

[T_Mom]

** Let me clarify. Not Paul Grant...but SHULMAN who needs to hear our stories!!!

[thereishope]

I believe that is his email and you just add @aol.com. I have aol but haven't looked a profile up in such a long time. I'll mess around and see if I can remember. It used to be if you have aol you have access to other aol users info. Don't know if it's still the case.

 

 

Hey everyone...check out the 2 comments from Richchek on Sept 27 10:53 and 10:48 (it's a little ways back in the comments). He is a pediatrician and his dd has PANDAS...she's been on antibiotics for 10 years. She was originally evaluated/diagnosed at NIH. I don't know if there is a way to send him a msg...I guess we could post something and hope he sees it (but not all of the weirdos on aol!).

[thereishope]

Paul Grant returned my email. He wants to review the link. I am waiting for another response. I was polite in my original email and just cited how son's history and the obvious strep/PANDAS connection. I told him I would be happpy to correct any misundertsanding PANDAS parents have if he would like me to do so explain his stance clearly.

 

 

 

[quote name='Vickie' post='39485'

I think everyone on this board needs to send Mr. Grant an email telling him about their child and experience with Pandas. I'm getting sick of hearing that there isn't enough evidence out there to justify Pandas as a real dx. MY CHILD IS ENOUGH EVIDENCE-as is everyone else's on this board. We need to start flooding email boxes so they no longer have an excuse to pretend that we do not exist!

 

I'm sending Mr. Grant an email today and I'm asking you to do the same:

 

PaulGrant@mail.nih.gov

[thereishope]

He responded. He was very polite. Provided me with the NIMH link to PANDAS which I've read countless times over the past year. For those who were still considering emailing him, I think it is best not to.