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PANDAS study


EAMom
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Isn't this the hospital that several members went to and they got no help b/c they don't believe in or treat PANDAS?

 

http://www.chp.edu/CHP/PANDAS

 

The same thing is going on here, I just got off the phone with a doctor in Phoenix. He said he did not believe in PANDAS..he is so closed minded about this. I no!! they don't have a clue what is going on with our kids, there are so many kids that have some kind of movement disorder.

I am fed up! I what answers.........Why are there so many kids sick with this.

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Isn't this the hospital that several members went to and they got no help b/c they don't believe in or treat PANDAS?

 

http://www.chp.edu/CHP/PANDAS

 

The same thing is going on here, I just got off the phone with a doctor in Phoenix. He said he did not believe in PANDAS..he is so closed minded about this. I no!! they don't have a clue what is going on with our kids, there are so many kids that have some kind of movement disorder.

I am fed up! I what answers.........Why are there so many kids sick with this.

 

Judy, my daughter sees a very good pediatrician in Phoenix, who does believe in PANDAS, but most the specialists he sends us to, do not. Do you bring your son to Phoenix for medical care? Anyway, I'm giving this doctor info and he'll usually do what I want as long as he feels its safe. If it is outside "standard medical protocol"

he'll usually still do it as long as he has some reliable research (which he puts in her medical file) to justify it.

 

Let me know if you want his name and phone #, I'll PM it to you.

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EA Mom,

 

Yes....I live in Pittsburgh and went to CHP when my son first manifested with PANDAS. I was told by the neurologist there "he didn't believe in PANDAS." At that point, over a year ago, no one there could/would help. I was all over this study when I first heard of it a while back. I have spoken to Dr Martin's (the one doing the study) nurse on numerous occasions. He said she is skeptical of PANDAS and is doing this study, it sounded like, to kinda disprove it. The kids see her and all she does is do a throat culture to see if it correlates to when these kids have onset. She looks for high strep titers because "kids with PANDAS have high strep titers." When I mentioned mine didn't, and many don't, he acted like I was nuts. She offers no treatemnts.......then they send the kids to a psych there. I told the nurse what I was looking for (IVIG, someone to work with locally who will consult with docs) and he basically told me I would need to go elsewhere. They really sounded clueless........when I mentioned IVIG for PANDAS...he said Dr. Martin said it is contradictory because IVIG adds antibodies....which they have "too many of." I explained that IVIG is also used in numerous autoimmune conditions for its ability to settle down, change, block, etc. the immune system. He said..."that sounds interesting...I'll have to mention it to her." Clueless, really. I offered to go down there and speak to Dr. Martin to try and help and show her the numerous reports I have....all the experience and stories I have, etc. He didn't seem interested. I then asked if I could just drop off some literature for Dr. Martin to read....he also wasn't interested. What a shame!!

 

Kelly

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I wonder if we shouldn't all just start "showing up" with our kids and their detailed histories....

...you know, make appt.s take the kids, their histories, and their reactions to treatments...and ask for explanations.

 

This week I listened to the congressional hearings (from earlier in Aug.) on health care (C-Span)--this session was specifically on Autism.

 

The Head of NIMH noted that research was taking off and that it appeared that autism was a

"synaptic disorder"... I just wanted to raise my hand and ask WHAT ABOUT PANDAS!!!

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Absolutely pathetic.

 

Sorry for a rant, but I am sick to death of hearing "I don't know if I believe in PANDAS" or "PANDAS is very contoversial" or worse yet, "PANDAS does not exist"

 

I think every parent whose child has had a positive throat culture WITH a NORMAL titer should contact this misinformed physician. I plan on doing it after this post. I want his expalnation as to why my child has a positive throat culture yet a normal titer. Physicians such as Leckman, Dr. K, Dr. Swedo, Dr. Latimer, all need to speak loud and clearly to this physician and educate him as to strep titers.

 

So many precious children are being harmed b/c of physicians like him and it needs to stop.

 

Colleen

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You know colleen, everytime I hear a doc or other medical person tell me that "PANDAS is controversial" it makes me want to scream. But I resist the urge b/c I know it's better to smile and humor them so they think I'm a sane person.

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I on the other hand want to ask them "and what do you think is the controversy -- are you referring to that research by Kurlan where he proported to have PANDAS kids but none of them had any OCD oscillations in a 2 year study unlike Swedo kids who had +/- 20 pt variances on CY-BOCS scale?" I supposed when you exclude the subjects with the actual disease from your sample, it's not surprising that the sample doesn't differ from the controls. Grrr. 2 years on NIMH money wasted. They could at least have gotten some controls from Swedo.

 

 

You know colleen, everytime I hear a doc or other medical person tell me that "PANDAS is controversial" it makes me want to scream. But I resist the urge b/c I know it's better to smile and humor them so they think I'm a sane person.
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You know colleen, everytime I hear a doc or other medical person tell me that "PANDAS is controversial" it makes me want to scream. But I resist the urge b/c I know it's better to smile and humor them so they think I'm a sane person.

 

 

I love that line EAMom...I agree it is good for them to think we are "sane" :( ...

though truthfully, joining the PANDAS club has had a radical effect... I don't care anymore (and I know you agree) what anyone thinks about me--

 

What I want is one of the nay-sayers to EXPLAIN TO ME why, how, OCD and tics go AWAY when this subset of kids are given antibiotics and/or steroids???!!!

 

In reviewing the last year and a half that we have been through with my h. the phrase "post traumatic stress syndrome" did come up...:)

Blessings All--

 

 

 

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