Getting the word out -- an article from Latitudes

[LNN]

Super job! You captured a parent's frustration perfectly - ask for an anti-psychotic and it's yours, no questions asked. Ask for antibiotics and they look at you like you've just asked them to give your child crack cocaine. Hopefully some kids who are suffering with mis-diagnosis will be helped when their parents read your article.

 

Laura

[tpotter]

Fantastic article, Buster. Thank you so much for sharing.

[momaine]

The best article I've read about PANDAS so far. It comes the closest to helping other people understand what we've been going through other than living with it, that I've encountered. Great combination of emotion and fact. So glad the word is getting out there.

 

Angela

[Tenacity]

Dear Buster,

 

I too admire your factual, forthright, pointed, lucid, accessible, and concise article. And I plan to pass it along to a number of people I hope to enlighten. However, when I do, I will be providing my own addendum. I wish you might have placed the role of strep in PANDAS in a broader context. A kid who's been sick with PANDAS for years and been misdiagnosed may turn up with a terrible PANDAS exacerbation caused by some agent other than strep, and, in fact, show no signs whatsoever of strep. I know you know this, but most people don't. Yes, we should test for strep, and get rid of it when we find it, in order to protect kids from post-infectious autoimmune disease. But as long as there are doctors who mistakenly believe that the absence of strep (or anti-strep antibodies) precludes the presence of PANDAS, some of the kids who are the very sickest -- and have been sick the longest -- will be stuck with misdiagnoses, inappropriate and sometimes harmful medical treatments, and no treatment whatsoever for the autoimmune disease that's attacking their brains.

 

Tenacity

[Buster]

Hi Tenacity,

 

Your point is a good one. It was hard to know where to draw the line in the article between the personal experience, the clincial symptoms, and explaining the known and projected pathophysiology. In our case we had exacerbations with Fifth's disease and recently with a fever with unknown cause (likely viral), but it was hard to weave into the article.

 

What I hope other parents will do is help get their stories out there. Kaplan says routinely, "observe in the field explain in the lab". This is really the power of writing up the stories and sharing them with folks like Diana P. and others where they can get the stories in front of the researcher -- sort of the "see there's more here than you thought."

 

I've started a couple times to write up a PITAND fact sheet (to parallel the PANDAS fact sheet) but haven't finished it yet. I keep hoping for some breakthrough in pathophysiology research that I can add into the write up.

 

Regards,

 

Buster

 

Dear Buster,

 

I too admire your factual, forthright, pointed, lucid, accessible, and concise article. And I plan to pass it along to a number of people I hope to enlighten. However, when I do, I will be providing my own addendum. I wish you might have placed the role of strep in PANDAS in a broader context. A kid who's been sick with PANDAS for years and been misdiagnosed may turn up with a terrible PANDAS exacerbation caused by some agent other than strep, and, in fact, show no signs whatsoever of strep. I know you know this, but most people don't. Yes, we should test for strep, and get rid of it when we find it, in order to protect kids from post-infectious autoimmune disease. But as long as there are doctors who mistakenly believe that the absence of strep (or anti-strep antibodies) precludes the presence of PANDAS, some of the kids who are the very sickest -- and have been sick the longest -- will be stuck with misdiagnoses, inappropriate and sometimes harmful medical treatments, and no treatment whatsoever for the autoimmune disease that's attacking their brains.

 

Tenacity

[sf_mom]

Great Article! THANK YOU for all your efforts on behalf of PANDAS.

[justinekno]

Thank you for doing this. It's a great article. I have sent the link to family to help "explain" our situation.

[mama2alex]

Wonderful article! Thank you for all you do. I have a whole list of people I plan to share this with.

[Mary M]

Thank you Buster...you are so eloquent, so informed...and just as full of sorrow as the rest of us. How can we ever thank you for what you are doing for all of our children.

[Buster]

You're making me blush - but thanks for the kind comments -- y'all can stop now.

 

My purpose in writing the article was to overcome some of the information that was in a previous article that was based mostly on the out-of-date NIMH website. Hope others will write papers too and get more color to the disease out there. The item that I'm finding time and time again when talking with various researchers is that they have never heard of the +17 pt change in CY-BOCs scores in the OCD symptoms of PANDAS -- I point them to Snider's early papers and they are a bit surprised. In our case we definitely had the jump from slightly nervous kid to full on psychosis.

 

Buster

[peglem]

You're making me blush - but thanks for the kind comments -- y'all can stop now.

 

My purpose in writing the article was to overcome some of the information that was in a previous article that was based mostly on the out-of-date NIMH website. Hope others will write papers too and get more color to the disease out there. The item that I'm finding time and time again when talking with various researchers is that they have never heard of the +17 pt change in CY-BOCs scores in the OCD symptoms of PANDAS -- I point them to Snider's early papers and they are a bit surprised. In our case we definitely had the jump from slightly nervous kid to full on psychosis.

 

Buster

Do you have a link to that paper? My daughter's psychiatrist is interested in PANDAS in a let's-see-how-this-all-turns-out kind of way and I think that study would be something she'd like to see. Not that anybody can get a ybocs score on my kid, but she does have other patients.

[laurenjohnsonsmom]

One word...."AMAZING"! (I am referring to you and the article)

 

EAMOM-you're not 1/2 bad, yourself!

 

I just want to reach out and (((hug))) you both!!!

 

-Lynn

 

I wrote an article for the Latitudes online newletter to provide a parent's perspective on PANDAS. Sheila was kind enough to forward me the link to an external website that picked up on the article. The external website asked Sheila for rights to repost the article. I like that it both linked back to the ACN forum and made the article available at this URL.

 

http://www.foodsmatter.com/asd_autism/misc...les/pandas.html

 

Buster

[Buster]

You're making me blush - but thanks for the kind comments -- y'all can stop now.

 

My purpose in writing the article was to overcome some of the information that was in a previous article that was based mostly on the out-of-date NIMH website. Hope others will write papers too and get more color to the disease out there. The item that I'm finding time and time again when talking with various researchers is that they have never heard of the +17 pt change in CY-BOCs scores in the OCD symptoms of PANDAS -- I point them to Snider's early papers and they are a bit surprised. In our case we definitely had the jump from slightly nervous kid to full on psychosis.

 

Buster

Do you have a link to that paper? My daughter's psychiatrist is interested in PANDAS in a let's-see-how-this-all-turns-out kind of way and I think that study would be something she'd like to see. Not that anybody can get a ybocs score on my kid, but she does have other patients.

 

Here's one you can use

[Murphy2004] Murphy TK, Muhammad S, Soto O, et al. "Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics", Biological Psychiatry, Volume 55, Issue 1, Pages 61-68, January 2004 http://www.journals.elsevierhealth.com/per...0704-2/abstract

[peglem]

You're making me blush - but thanks for the kind comments -- y'all can stop now.

 

My purpose in writing the article was to overcome some of the information that was in a previous article that was based mostly on the out-of-date NIMH website. Hope others will write papers too and get more color to the disease out there. The item that I'm finding time and time again when talking with various researchers is that they have never heard of the +17 pt change in CY-BOCs scores in the OCD symptoms of PANDAS -- I point them to Snider's early papers and they are a bit surprised. In our case we definitely had the jump from slightly nervous kid to full on psychosis.

 

Buster

Do you have a link to that paper? My daughter's psychiatrist is interested in PANDAS in a let's-see-how-this-all-turns-out kind of way and I think that study would be something she'd like to see. Not that anybody can get a ybocs score on my kid, but she does have other patients.

 

Here's one you can use

[Murphy2004] Murphy TK, Muhammad S, Soto O, et al. "Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics", Biological Psychiatry, Volume 55, Issue 1, Pages 61-68, January 2004 http://www.journals.elsevierhealth.com/per...0704-2/abstract

thanks!