Twitter

[michele]

Beth Maloney is on a grassroots effort to get her message from Saving Sammy out to the public about PANDAS and the strep OCD connection. She emailed me to get onto Twitter and twit to Oprah's producer Lisa Erspamer. I figured it out fairly easily and had never used it before. It would be great if others here would also try to respond to her producer.

 

"Would you be wiling to help me out? I want to get this message out there in a bigger way: the OCD - strep connection. Here's the scoop. There is a producer at Oprah who has a Twitter account. Her name is Lisa Erspamer. If she gets enough "tweets" about this story, it might get on the show. It worked for another book about six months ago. I just made a Twitter account yesterday, and it's not hard to do. Then you search Lisa Erspamer on the home page under Find People and send her a quick tweet that they need to get the book on the show! Grass roots can make this kind of thing happen and in the past 24 hours a huge number of parents, friends and family members have joined this effort. When Oprah realizes that she can change the course of medicine, she'll do it. It's disgraceful that our beautiful families and kids are continuing to suffer. So if you'd send the tweet to Lisa, you’ll help channel the power of Oprah. Thanks and keep me up to date. Beth "

 

Maybe she will be successful to get Oprah or Dr. Oz's attention! We can only hope and pray that someone will listen. It is worth a try.

Michele

[faith]

Just curious, is this to provide awareness for those afflicted by it or more for the medical community? because really I think parents can find this info, its the 'Medical Community' that needs to hop on board......I'm not picturing them sittin around watching Oprah. I mean, with so many doctors not knowing much about the research on PANDAS, or 'believing' in it, or wanting to learn how to treat it, I just keep wondering......"didn't they get the memo??"....... lol. ............

 

 

Faith

[dcmom]

Faith- unfortunately this info is not out there for parents to find. The word needs to get out, not only to parents, but to teachers, school psychologists, guidance counselors, parents, grandparents, and anyone who may be involved in children's lives. We have the info, but I shudder to think how many kids are currently suffering undiagnosed. Since the medical community is not being helpful, we need parents to be armed with the information to walk into doctors offices and demand treatment. Go Beth!

[faith]

I agree with you, but I still feel like the scale is tipped on the side of we, the parents, vs. the medical community. Why aren't doctors getting educated on this? It should be from 'witnin' the medical community itself. We all know what it feels like questioning our doctor about a disorder that WE know about, but THEY do not seem to.

 

Also, if you noticed, with the Matt Lauer segment, the doctor there kind of stated that she didn't want to say too much and be the 'source' of all information, or something like that. I felt she could've said more. Then Matt Lauer goes on to say something like "and people should know that this is caused by something as common as a simple strep infection?"..... I do think that those short segments don't really tell the whole story, and some could come away thinking that just getting strep causes all this. and that the treatmentis are just "simply" antibiotics...we all know there is a lot more to it and a whole lot of trial and error and no "simple treatment" or one size fits all.

 

but certainly, the more exposure and info out there, the better.

 

 

 

Faith

[sf_mom]

I agree and already submitting 'Saving Sammy' to the Dr. OZ Show last week.

 

Faith- unfortunately this info is not out there for parents to find. The word needs to get out, not only to parents, but to teachers, school psychologists, guidance counselors, parents, grandparents, and anyone who may be involved in children's lives. We have the info, but I shudder to think how many kids are currently suffering undiagnosed. Since the medical community is not being helpful, we need parents to be armed with the information to walk into doctors offices and demand treatment. Go Beth!

[Stephanie2]

I think that both the parents and the medical community need to be educated. It took me over 3 years and TONS of money and effort and heartache to find out what was wrong with my son. And I was the one who came up with it through months of research on the internet. If only there were an oprah show about it so that I could have had that "ah-ha" moment years earlier, we would not be so tapped out now...financially, emotionally, physically, etc.

 

In my opinion, the more parents that become aware that their child has this disorder (and I don't believe that it is only 1 in 2000) then the more the medical community will be forced to become educated b/c there will be a greater demand for proper medical attention. Right now they don't have to become educated b/c they wouldn't be able to diagnose a pandas child unless he/she were wearing a sign that says "strep" on their forehead and washing their hands over and over in the doctors office.

 

Also, my son's DAN doctor said that his wife makes him watch oprah at night on tivo!!

 

Stephanie

 

I agree with you, but I still feel like the scale is tipped on the side of we, the parents, vs. the medical community. Why aren't doctors getting educated on this? It should be from 'witnin' the medical community itself. We all know what it feels like questioning our doctor about a disorder that WE know about, but THEY do not seem to.

 

Also, if you noticed, with the Matt Lauer segment, the doctor there kind of stated that she didn't want to say too much and be the 'source' of all information, or something like that. I felt she could've said more. Then Matt Lauer goes on to say something like "and people should know that this is caused by something as common as a simple strep infection?"..... I do think that those short segments don't really tell the whole story, and some could come away thinking that just getting strep causes all this. and that the treatmentis are just "simply" antibiotics...we all know there is a lot more to it and a whole lot of trial and error and no "simple treatment" or one size fits all.

 

but certainly, the more exposure and info out there, the better.

 

 

 

Faith

[coco]

I agree that the more shows that feature pandas for ANYONE to hear and learn will be able to inform and educate others. My daughter was diagnosed with pddnos at age 5 but even the doctors "diagnosing" her said that she did not meet all the criteria but had to "put down something" for her to receive services. For years we have been to doctors, specialists, pschys, DANs, neurologists, etc. and only an ALLERGIST mentioned possible pandas to us this year because he attended a medical conference where sue swedo was a speaker. Now our daughter's health, life and future looks completely different. She is like a different child after ivig and will be receiving ivig monthly.

 

Every time I hear that commercial that Mariska Hargitay does the voice over for that says, "The chances of your child being in a broadway play, 1 in 11,000 -- the chances of your child being diagnosed with autism, 1 in 166" I want to scream, AUTISM is pandas!!!! Talk about PANDAS! Tell the parents if your kid has been diagnosed with pddnos, developmental delay, autism, CHECK FOR PANDAS!!!!!! It makes perfect sense and yet the connection is not being made to the public.

 

Thank God for all you super parents!

[EAMom]

Great point Coco...I wonder how many kids are written off as bipolar, autistic, "disturbed", ocd, tourettes, oppositional defiant disorder, ADD etc. that are actually pandas. How many kids that are instituitonalized in a psych. ward (or in jail, or just high school dropouts)are PANDAS (perhaps combined that with less-educated, less affluent parents who might have their own issues and don't have the resources to advocate for their child.

 

We really don't know how far PANDAS reaches...I'm sure there are kids with no OCD (or not easily identified OCD) and no tics that wouldn't be diagnosed b/c their primary features are the co-morbid symptoms: mood lability, adhd, etc.

 

I'm glad your dd is doing better!

[Iowamom]

Great point Coco...I wonder how many kids are written off as bipolar, autistic, "disturbed", ocd, tourettes, oppositional defiant disorder, ADD etc. that are actually pandas. How many kids that are instituitonalized in a psych. ward (or in jail, or just high school dropouts)are PANDAS (perhaps combined that with less-educated, less affluent parents who might have their own issues and don't have the resources to advocate for their child.

 

We really don't know how far PANDAS reaches...I'm sure there are kids with no OCD (or not easily identified OCD) and no tics that wouldn't be diagnosed b/c their primary features are the co-morbid symptoms: mood lability, adhd, etc.

 

I'm glad your dd is doing better!

[/quote

 

Hi all!

 

Getting PANDAS out in the open is very necessary to keep the momentum going. I have a gut feeling that PANDAS is very far reaching. Eight years of all sorts of dx'es for our son. Counselors/therapists is another group needing to get in the know so they can get the kids referred for a possible dx and tx.. I've been "educating" the counselor we have spent a considerable amount of time with in the past. She now includes more in depth medical hx questioning to possibly "catch" these PANDAS cases. If people are aware of PANDAS, the classic abrupt onset is what they are familiar hearing/dealing with. EAmom...your email is so true. OCD in our boy is not easily recognized as such...more in the realm of "perseverative thinking", and not the "classic" OCD presentation.

 

That's all for now.

 

Dawn

[T_Mom]

Last night -- watched a film documentary on autism where they made the point that obsessions and compulsions are of course a key aspect of the autism diagnosis...I sat there and was struck by the obvious similarities, the possible connections between OCD/PANDAS? and this thing we call autism.

 

A couple of weeks ago I heard the Head of NIH make a statement (at a Health Reform hearing broadcast on C-Span...) that NIH research was leading to the conclusion that "autism is a synaptic disorder"...

 

I shudder to think of the connections.

[peglem]

Last night -- watched a film documentary on autism where they made the point that obsessions and compulsions are of course a key aspect of the autism diagnosis...I sat there and was struck by the obvious similarities, the possible connections between OCD/PANDAS? and this thing we call autism.

 

A couple of weeks ago I heard the Head of NIH make a statement (at a Health Reform hearing broadcast on C-Span...) that NIH research was leading to the conclusion that "autism is a synaptic disorder"...

 

I shudder to think of the connections.

On page 11 of the mouse model paper:

We were

intrigued to find evidence suggestive of a deficit in

social interaction in both GABHS donors and

GABHS-R passive transfer mice. The low rate of

social approaches and the more passive and defensive

behaviors in male resident GABHS donor and passive

recipient mice in the resident–intruder test of social

interaction and territoriality may reflect extension of

abnormalities to socioemotional domains and involvement

of related (limbic) circuitry. Indeed, territorial

behavior and intermale aggression are associated with

hippocampal connectivity patterns.61 The combination

in GABHS donor mice of high levels of repetitive

behaviors in open-field testing and the hole-board

learning and memory task, combined with deficits in

social interaction and territoriality in the resident–

intruder test, is reminiscent of the repetitive behaviors

and aberrant reciprocal social interactions of

ASD.62

 

I don't think all autism is PANDAS, but I think PANDAS can cause autism. But, I've come to the realization that autism is not a diagnosis at all-just symptoms of some underlying condition/disease. I think my daughter's PANDAS is the source of her autism symptoms....But, treating the PANDAS at this point will not repair the messed up development- only give her an excellent shot at doing some of that development and maybe getting back some of the things she's lost.

[pixiesmommy]

Okay, I joined and found her but I have no idea how to type something to her that she will see. A little help?

 

 

I'm answering my own question here, because I found it on Beth's Facebook page. In the box where you type your status, start by typing @LisaErspamer and then a space and your message to her, and then hit Reply.

[pixiesmommy]

Also, I joined the Oprah fan page on Facebook and saw that she just did a show on a girl who was 5 yrs old and living with Schizophrenia. I will post something on that page as well.

[mama2alex]

I just signed up for Twitter and sent a message to Lisa Erspamer. It was quick and easy! Hope everyone can find the time to do this.