Sammy in the News

[ajcire]

I am confused. Grant isn't the one who said it was not real. Wasn't it someone else in that article who said that there is no evidence and no evidence that long term antibiotics helps?

[peglem]

I am confused. Grant isn't the one who said it was not real. Wasn't it someone else in that article who said that there is no evidence and no evidence that long term antibiotics helps?

 

Grant said as many as 10% of OCD kids may be PANDAS. Shulman, from Chicago said (sarcastic paraphrase) that diseases don't exist until scientists prove they exist.

[EAMom]

I think this is the guy...shulman http://www.ncbi.nlm.nih.gov/pubmed/19242249

 

I don't have the full-text...but I suspect the guy referenced a lot of Singer/Kurlan studies.

[L Haven]

PaulGrant@mail.nih.gov

 

You know, I didn't even read the article because I figured it would be sensationalized, inaccurate, etc. I was just surprised that aol was giving Sammy his 15 minutes. But THIS is unacceptable. I'll send an email today.

So that's at least, what, 4 of us?

 

Thank you for posting his e address!

Lena

[L Haven]

I was told by our immunologist that there isn't evidence to suggest that antibiotics help, other than anecdotal. However there is not evidence that it does NOT help, either. He definitely suggests using antibiotics, and my impression is that at this point, at least offering the option is standard of care, yes?

[peglem]

After reading that abstract, I'm getting really confused. Are there hordes of tourettes and OCD patients clambering for antibiotic treatment? They make it sound like this is the case...

[EAMom]

After reading that abstract, I'm getting really confused. Are there hordes of tourettes and OCD patients clambering for antibiotic treatment? They make it sound like this is the case...

 

I think the problem is that doctors think we (pandas parents) are "desparate internet parents searching for a cure" , using "unrproven and dangerous treatments such as IVIG and prophylactic antibiotics" when our children really just have OCD and tourettes and we should accept that and their psych. meds which they say will work.

[mama2alex]

I just wanted to share what happened today. We stopped in to our after school care room (Alex will no longer go and I'm about to officially pull him out because I can't work right now anyway) and one of the ladies came up to me and told me she'd seen the segment on the Today show. I had sat down with them the first day of school and tried to explain what was going on, but she said now she really understood. She said she was praying for Alex. I broke down and cried right there. It meant so much to me that someone "got it."

 

Increasing the awareness is important on so many levels. I am really thankful to Beth Maloney for writing this book, and to Sammy for having the courage to allow his story to be shared and going on national television.

[L Haven]

You're right Vickie, and the juxtaposition makes me crazy. Inevitably the main page sports items such as these: MILLIONS FEARED DEAD IN MONSTER QUAKE / BEYONCE AT THE GRAMMYS!

[EAMom]

I would say that the swedo's pen/azith. study is evidence that prophylactic abs helps (even if the improvement isn't 100%).

[thereishope]

The reason I cannot get a prophylactic antibiotic around here is because the pediatric neurologist that everyone turns to to ask his opinion about proph antibiotics and PANDAS, is one of the people who I think criticized that study.

 

I would say that the swedo's pen/azith. study is evidence that prophylactic abs helps (even if the improvement isn't 100%).

[EAMom]

Where do you live Vickie? Who's is asking the neurologist, the peds? Have you tried seeing an immunologist or rheumatologist (who might treat your son like ARF)?

[thereishope]

I live in Cincinnati. I'm still exploring a few more options. All hope is not lost yet.

 

 

Where do you live Vickie? Who's is asking the neurologist, the peds? Have you tried seeing an immunologist or rheumatologist (who might treat your son like ARF)?

[michele]

Vickie,

Curious have you contacted OH State School of Med yet? I wonder what their stance is on PANDAS? I have heard they are a good medical school.Also isn't your BIL in med? Does he have any leads on Dr's in OH who may be more receptive to treating PANDAS? I know there is a Collins in Toledo who is a ped immunologist but she wants a neuro on board who is local and I am not sure who that is? The one she had worked with is no longer seeing kids. I agree your neuro has gotten through to ped neurologist in OH and they have spread the word not to treat with antibiotics but meds only. I found another person in Cleve. that can't find help. I know Dr.Nevada Reed at Kids link will treat with antibiotics but does not accept insurance and we are on a PPO. http://www.kidslinkohio.com/ Everyone raves about how great she is.

 

Michele

I live in Cincinnati. I'm still exploring a few more options. All hope is not lost yet.

 

 

Where do you live Vickie? Who's is asking the neurologist, the peds? Have you tried seeing an immunologist or rheumatologist (who might treat your son like ARF)?

[thereishope]

No, I haven't contacted the Ohio School of Med yet. I will look into them tonight and contact them. I don't mind contacting various places, getting their stance on PANDAS, and trying to educate them more. To my suprise, I've had a lot of positive feedback so far.

 

btw...Did you see how the AARDA fb group posted a link to the you tube video? And they found it on their own! I contacted them a few months ago giving them info on PANDAS.

 

Off topic, we also have a local free parents magazine for the tri-state, I want to conatct them for at least a blurb in their mag. I can see them being interested in the disorder.

 

My brother in law is a surgeon. He just finished his fellowship last year. He had never heard of PANDAS prior to my son, but then, he is not in pediatrics, psychology, neurology, etc. What does he do? Oh, yeah, I think it's bariatric. I know a few more in the med field (specifically pediatrics) and they haven't had good leads.

 

I was in contact with Beth Maloney too and she has yet to find anyone in Ohio.

 

 

Vickie,

Curious have you contacted OH State School of Med yet? I wonder what their stance is on PANDAS? I have heard they are a good medical school.Also isn't your BIL in med? Does he have any leads on Dr's in OH who may be more receptive to treating PANDAS? I know there is a Collins in Toledo who is a ped immunologist but she wants a neuro on board who is local and I am not sure who that is? The one she had worked with is no longer seeing kids. I agree your neuro has gotten through to ped neurologist in OH and they have spread the word not to treat with antibiotics but meds only. I found another person in Cleve. that can't find help. I know Dr.Nevada Reed at Kids link will treat with antibiotics but does not accept insurance and we are on a PPO. http://www.kidslinkohio.com/ Everyone raves about how great she is.

 

Michele

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