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Beth Maloney on Good Day LA today...


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but was it the Strep "A", or did they say it was some other like strep B? just curious. I too am confused about the different strains of strep, for the finger is usually pointed at "A". I don't think they know if B is troublesome as well.

In our case it was Group A beta-hemolytic strep on the skin in the peri-rectal area.

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Buster -

Can we pull some of this conversation out into a new thread - one that identifies our conversation as "The NIMH campaign" or some such? Not sure how to do that. But what we're talking about is exciting and long overdue and has nothing to do with Beth Maloney appearing on tv.

 

I too support an email campaign to lobby for changes to the NIMH web page. It is so very wrong. Between this page and the Wikipedia page (I know, I won't get you started), it does such a disservice to kids.

 

So let's start a new thread and post some phrases/thoughts that we can all include in our emails (with footnote sources for research studies if possible).

 

If anyone has a better source of NIMH email contacts, please post that as well. We need to reach the people who have the authority to make changes. People in the public communications departments, people in charge of funding, Dr. Swedo's boss...

 

I think we as a community underestimate our power to advocate for change. We have a voice. We just need to use it and present ourselves as informed, calm and rational parents expecting scientifically-supported medical treatment for our children who suffer from a recognized disease. No drama, no desperation, no apologies.

 

If some of us don't endorse the message as it's being presented by Beth Maloney, then we have a responsibility to our children to offer a revised message, supported by research.

 

On that note, I confirmed with AutismOne that both Dr. Latimer and Dr. Kovacevic will be speaking at the May conference in Chicago. AutismOne has 100,000 members in the US and UK and advocates for biomedical research and treatments for autism. They are very interested in "co-morbid" diseases that could be effecting their children.

 

Every step we as a community take to get the word out takes us one step closer to slaying this beast called Pandas. Time to stop talking amongst ourselves and start speaking out.

 

Laura

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Susan,

but was it the Strep "A", or did they say it was some other like strep B? just curious. I too am confused about the different strains of strep, for the finger is usually pointed at "A". I don't think they know if B is troublesome as well.

 

Thanks

Faith

 

Faith, it was strep A. I still wonder about B since I also have had strep B this year and I wondered if it affected my kids but I just don't know.

 

Susan

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I love it when I can feel the excitement of change and empowerment in the air.

 

Can anyone get tickets to the conference?

 

 

Buster -

Can we pull some of this conversation out into a new thread - one that identifies our conversation as "The NIMH campaign" or some such? Not sure how to do that. But what we're talking about is exciting and long overdue and has nothing to do with Beth Maloney appearing on tv.

 

I too support an email campaign to lobby for changes to the NIMH web page. It is so very wrong. Between this page and the Wikipedia page (I know, I won't get you started), it does such a disservice to kids.

 

So let's start a new thread and post some phrases/thoughts that we can all include in our emails (with footnote sources for research studies if possible).

 

If anyone has a better source of NIMH email contacts, please post that as well. We need to reach the people who have the authority to make changes. People in the public communications departments, people in charge of funding, Dr. Swedo's boss...

 

I think we as a community underestimate our power to advocate for change. We have a voice. We just need to use it and present ourselves as informed, calm and rational parents expecting scientifically-supported medical treatment for our children who suffer from a recognized disease. No drama, no desperation, no apologies.

 

If some of us don't endorse the message as it's being presented by Beth Maloney, then we have a responsibility to our children to offer a revised message, supported by research.

 

On that note, I confirmed with AutismOne that both Dr. Latimer and Dr. Kovacevic will be speaking at the May conference in Chicago. AutismOne has 100,000 members in the US and UK and advocates for biomedical research and treatments for autism. They are very interested in "co-morbid" diseases that could be effecting their children.

 

Every step we as a community take to get the word out takes us one step closer to slaying this beast called Pandas. Time to stop talking amongst ourselves and start speaking out.

 

Laura

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I think it's important to remember that not every presentation of pandas is extreme though. I think I could describe my son's mood issues as irritable, moody... not a total 360 from normal. His is more subtle but definitely there. I guess what I mean is that if you didn't know my son you might not say wow, what's with that kid. If the definition of it really stresses extreme and sudden than kids like my son will totally be dismissed. I do think my son had a sudden onset but it was dismissed as a common childhood tic, an eye blink at the age of 2 with no other obvious symptoms... sure in hindsight I now recognize things that were in him then too but we just figured it was his personality.

 

It's such a broad spectrum, so hard to just fit into a nice simple explanation.

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Here is the conference flyer. http://conference.autismone.org/documents/...%20one%20ad.pdf

 

Jenny McCarthy will be the keynote speaker. Dr Latimer is tentatively scheduled to speak on Friday May 28th. I don't know when Dr K is scheduled.

 

I believe anyone can attend but there's no info on getting tickets. I'll check into it and let you know. I do know in the past there have been DVDs of presentations for those who couldn't attend. You can go to www.autismone.org and poke around.

 

Laura

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Here is the conference flyer. http://conference.autismone.org/documents/...%20one%20ad.pdf

 

Jenny McCarthy will be the keynote speaker. Dr Latimer is tentatively scheduled to speak on Friday May 28th. I don't know when Dr K is scheduled.

 

I believe anyone can attend but there's no info on getting tickets. I'll check into it and let you know. I do know in the past there have been DVDs of presentations for those who couldn't attend. You can go to www.autismone.org and poke around.

 

Laura

 

Hi Laura,

I'll start a new thread about the conference....so maybe Chicago locals will see it.

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I went to the site already and saw the dvd from the Canada conference, but didn't see anything about tix for 2010. Perhaps they are not available yet. Depending on price, I would really like to go. I make one trip a year to visit my family in Chicago, so I can multi task! It's only a 4 1/2-5 hour drive for me.

 

 

Here is the conference flyer. http://conference.autismone.org/documents/...%20one%20ad.pdf

 

Jenny McCarthy will be the keynote speaker. Dr Latimer is tentatively scheduled to speak on Friday May 28th. I don't know when Dr K is scheduled.

 

I believe anyone can attend but there's no info on getting tickets. I'll check into it and let you know. I do know in the past there have been DVDs of presentations for those who couldn't attend. You can go to www.autismone.org and poke around.

 

Laura

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[Dr. Kovacevic, Dr. Latimer and another mom (who has done PEX and understands the various issues of ASO/D-nase, etc etc) - are speaking as well as Beth M. at the Autism One conference. So that is all clear.

 

The good thing about her book, along with the recent Kaplan/Gilbert, Neurology, study on Pandas/Tourettes which just came out -- the GOOD thing is that these two recent publications have really angered Swedo and others that understand that pandas is a real illness.

 

I am finalizing the PANDASnetwork email list (about 350 people now?) - and then will solicit anyone who would like to get their "story" to Swedo. She wants to compile our stories and really prove how exceedingly familiar EACH STORY is. Dr. Nikolades who treated Sammy -- has only treated 10 pandas cases (she told another mom this in July I believe) -- and Beth M. has told me she is not current on ANY pandas research.

 

I have reached out to Beth M. early on before her book was published and she chose to do her own thing. I hope as she becomes more educated -- and really the doctors need to reach out to her, Swedo, Trifiletti, Latimer, etc. --- and help use her as a good vehicle for information. I sent her latest "update" to Swedo and others. The 4x6 card Beth M proposes may be a nice idea: BUT SHE NEEDS TO GET INPUT FROM Medical professional - namely Swedo -- who would gladly educate her.

 

If anyone has Beth's ear ---- encourage her to email Swedo. I know she would encourage her to be more accurate and more helpful.

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I am finalizing the PANDASnetwork email list (about 350 people now?) - and then will solicit anyone who would like to get their "story" to Swedo. She wants to compile our stories and really prove how exceedingly familiar EACH STORY is.

If anyone has Beth's ear ---- encourage her to email Swedo. I know she would encourage her to be more accurate and more helpful.

 

 

Thanks Diana for your work on an e-mail list and helping us to get our stories to Dr. Swedo. We are working with quite a different protocol and our story is not at this time in records with Latimer, or Dr. K so I really appreciate that we'll have some way of recording also!

 

I also echo what someone said about Beth Maloney (perhaps Vicki ?) -- I have very different expectations about Beth as A - the mother to Sammy and author of her book promoting her story, thoughts, mission about PANDAS, and B - the national spokesperson for an organizaiton named The PANDAS Foundation. These seem to be a bit blurred now and I believe they are hugely different places to speak from.

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I think it's important to remember that not every presentation of pandas is extreme though. I think I could describe my son's mood issues as irritable, moody... not a total 360 from normal. His is more subtle but definitely there. I guess what I mean is that if you didn't know my son you might not say wow, what's with that kid. If the definition of it really stresses extreme and sudden than kids like my son will totally be dismissed. I do think my son had a sudden onset but it was dismissed as a common childhood tic, an eye blink at the age of 2 with no other obvious symptoms... sure in hindsight I now recognize things that were in him then too but we just figured it was his personality.

 

It's such a broad spectrum, so hard to just fit into a nice simple explanation.

 

I completely agree...even though my dd was extreme in Spring 08...for years she had low grade symptoms that I now realize were PANDAS. The urinary frequency at age 4.5 years (with FEVER 2 days later) was definitely PANDAS, but there were also tantrums, some difficult behavior, anxiety, periods of handwashing...that could easily have been written off as "normal childhood phases" or "temperment/personality" or "poor parenting" that were actually likely PANDAS. For most kids, it needs to get extreme for parents to realize that there is a big problem and learn about PANDAS. I think the milder kids are harder to pick and diagnose (so less likely to show up at the psychiatrists/docs or in a study).

 

Also, when PANDAS shows up as irritibility, hyperactivity, defiance, anxiety, I would think these symptoms are more likely to be dismissed as "parenting" or "temperment" issues. Whereas, when it is clear cut OCD (like Saving Sammy) or obvious severe tics...that's more likely to be identified as PANDAS. Mild tics that don't interfere too much with your life, those are also likely to be quickly dismissed by a ped as something "kids get".

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Maybe then PANDAS needs to be viewed as a spectrum disorder with varying levels of severity. It would make sense that the less severe cases would be more to identify as PANDAS.

 

Ellen

 

I think it's important to remember that not every presentation of pandas is extreme though. I think I could describe my son's mood issues as irritable, moody... not a total 360 from normal. His is more subtle but definitely there. I guess what I mean is that if you didn't know my son you might not say wow, what's with that kid. If the definition of it really stresses extreme and sudden than kids like my son will totally be dismissed. I do think my son had a sudden onset but it was dismissed as a common childhood tic, an eye blink at the age of 2 with no other obvious symptoms... sure in hindsight I now recognize things that were in him then too but we just figured it was his personality.

 

It's such a broad spectrum, so hard to just fit into a nice simple explanation.

 

I completely agree...even though my dd was extreme in Spring 08...for years she had low grade symptoms that I now realize were PANDAS. The urinary frequency at age 4.5 years (with FEVER 2 days later) was definitely PANDAS, but there were also tantrums, some difficult behavior, anxiety, periods of handwashing...that could easily have been written off as "normal childhood phases" or "temperment/personality" or "poor parenting" that were actually likely PANDAS. For most kids, it needs to get extreme for parents to realize that there is a big problem and learn about PANDAS. I think the milder kids are harder to pick and diagnose (so less likely to show up at the psychiatrists/docs or in a study).

 

Also, when PANDAS shows up as irritibility, hyperactivity, defiance, anxiety, I would think these symptoms are more likely to be dismissed as "parenting" or "temperment" issues. Whereas, when it is clear cut OCD (like Saving Sammy) or obvious severe tics...that's more likely to be identified as PANDAS. Mild tics that don't interfere too much with your life, those are also likely to be quickly dismissed by a ped as something "kids get".

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Also, when PANDAS shows up as irritibility, hyperactivity, defiance, anxiety, I would think these symptoms are more likely to be dismissed as "parenting" or "temperment" issues. Whereas, when it is clear cut OCD (like Saving Sammy) or obvious severe tics...that's more likely to be identified as PANDAS. Mild tics that don't interfere too much with your life, those are also likely to be quickly dismissed by a ped as something "kids get".

 

 

so very true! irritibility, hyperactivity, defiance, anxiety - exactly describes my son's presentation. we were so fortunate that a behavior therapist suggested pandas. no one else was anywhere near thinking that. i can't imagine where we'd be without that and of course, i had never heard of it. perhaps i should send her some flowers or something. :lol:

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Vickie, so true.... that is pretty much where I am at. You wait, you second guess... if it was more physical signs I would have a concrete reminder.

 

I also think when symptoms are mild, parents are more willing to wait it out. "I'll give it one more week". Then the parent becomes so used to the new behavior, it is no longer viewed as out of sorts but is considered the new norm.
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