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Dr Murphy's PANDAS/Cefdinir Study


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This study is not selecting candidates thru the neurologists eye like at Hopkins. Murphy is a psychiatrist and treats OCD and sees Pandas patients with sudden onset OCD and tics and chorea. I am hopeful the selection criteria will be better screened than Singers study. Also Murphy is the researcher that published the study proving PANDAS kids don't respond well to high dose SSRI's . I think her creditabiity is legit. She has also referred patients to immun docs. I would really like to hear from more parents whom see her. If you go on line she has a clinic specifically for PANDAS. She actually does intensive three week therapies for kids from throughout the world. I wish more parents whom have worked with her would post their experience with her.

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I think some doctors (Dr K, D L, Dr T, and more) are willing to give a diagnosis of PANDAS based on only one known strep triggered exacerbation because they have seen enough kids to know what it looks like. Especially when it is closely connected with strep and improvement after abx. They are comfortable with their diagnosis. I don't really have a problem with that. My son received his diagnosis after the first exacerbation. It was pretty cut and dry. Normal child. Then not normal child. Wait he has strep! Abx started. Saw improvement. Unfortunately we went on to fulfill the more than one time rule and had 3 strep triggered excaerbations.

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Given a day of contemplating this issue--this morning I am going to edit my original critical post re: the antibiotics study at USF...

 

I am thankful they are trying to ensure there IS research on the effects of antibiotics. For that I am extremely thankful--

 

(I guess it was a knee-jerk reaction to seemingly "withholding antibiotics" rather then "testing" antibiotics, and stems from our parental experience of having difficulty getting them when our d had crippling OCD)

 

Dr. Murphy is certainly someone who has been very knowledgeable of Pandas issues for sometime and apparently helpful to many families. We almost drove to FLA to see her when things were so bad--before we literally stumbled upon the effects of antibiotics and steroids (thanks Dr K.)

 

A research study that might "prove" antibiotics help with OCD and tics???

Yes!;)

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I only wish Dr. Murphy would treat adults, as I live in Tampa, but I just spoke with them and the answer is no. :-( Well, I am headed to Dr. K. My reaction to reading about the study was, well, even if it included adults, no way would I do it, way too desperate for treatment to have a chance of treatment. Judging from the response, it does seem like that's typical, the situation is often so pressing and a real treatment (when available and affordable) is going to sound a lot better than a maybe treatment.

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Someone who is participating in the study asked me to post something for them...

 

 

"...Dr, Murphy's primary concern is the child and if they thought it too risky for the child to be in the study (given past or present symptoms), they absolutely would not allow participation.  This includes if the child has already began meds for the study and began to backslide-they would immediately call off the study.  That is why it's so hard for them to get the numbers they need (because of them refusing participants or participants having to drop out early). The absolutely have advised me that if I ever felt uncomfortable in the study, then I could call it off at anytime with no problems from them.  At the first phone consult with Jeanette, she will ask pertinent info and help to decide if the child would qualify.  (Name omitted) actually had absolutely no PANDAS symptoms (though she did have some fancy named reflex in her legs that Dr.Murphy knows to be consistent with strpt) at the first visit, but began to flare a few weeks after, which is why we had 2 appts before beginning study meds.  It's also a quick way to get in to see Dr. Murphy and hear from a physician who knows so very much about this fight we're all experiencing, but has compassion and love for the kids she is treating."

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Someone who is participating in the study asked me to post something for them...

 

 

"...Dr, Murphy's primary concern is the child and if they thought it too risky for the child to be in the study (given past or present symptoms), they absolutely would not allow participation.  This includes if the child has already began meds for the study and began to backslide-they would immediately call off the study.  That is why it's so hard for them to get the numbers they need (because of them refusing participants or participants having to drop out early). The absolutely have advised me that if I ever felt uncomfortable in the study, then I could call it off at anytime with no problems from them.  At the first phone consult with Jeanette, she will ask pertinent info and help to decide if the child would qualify.  (Name omitted) actually had absolutely no PANDAS symptoms (though she did have some fancy named reflex in her legs that Dr.Murphy knows to be consistent with strpt) at the first visit, but began to flare a few weeks after, which is why we had 2 appts before beginning study meds.  It's also a quick way to get in to see Dr. Murphy and hear from a physician who knows so very much about this fight we're all experiencing, but has compassion and love for the kids she is treating."

 

I'm glad Dr. Murphy is being so careful. But I just don't see how this is going to be a successful study if all the placebo kids will be kids who don't need abx. Doesn't this type of study require that the test group and the control are made up of pretty much the same "types"? Y'know, matched for age gender and symptomology, severity? Isn't this why Swedo ended up testing one abx treatment against another?

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I don't know how to respond. When it was the possibility of more severe cases, everyone would be mad that she is jeopardizing kids by withholding antibiotics. Now that it's kids more leaning toward a milder cases (which we don't really know how mild) we are mad that is not representative of all PANDAS kids.

 

The thing is a study will never be representative of all PANDAS kids, There's too many variations of this disorder when one looks at age , how many onsets that occurred at time of study, what the symptoms were, severity, how long the child went before diagnosis, etc. And as we stand I think it would be too difficult to find a sample of PANDAS kids with the exact same symptoms, same age and gender, and willing to participate.

 

Perhaps once the results of this study is done, it will be followed with more challenging cases. I don't know if she has other in the works. I've heard different things about that and I have not gone to the source to find out the answer. Geller is doing a study to to start in Feb. I don't know what his critera is. Maybe he will do the more severe cases.

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I wasn't trying to be critical, Vickie, just trying to understand how the study will work. I don't know anything about Dr. Murphy, except what I've read on this board and all that has been positive. Still, I don't see how this study can be successful, but I'm no scientist.

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It's just a difficult situation, and really, I hope some day people will move away from the mindset that information isn't worthwhile unless it has been double-blind studied. Hopefully she will include a discussion on selection criteria and drop-outs, and be very careful with the analysis and conclusions. I think it's nice she's at least doing something, and would expect it to at least help the body of information.

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Sorry. I just woke up with a headache today and not in the best mood.

 

I think it's odd, coincidental, whatever you want to call it that Murphy is doing a Cefdinir study and then Geller is doing a Cefdinir and Augmentin study. Maybe Murphy's is the one to show that how an antibiotic can help the symptoms compared to no antibiotic at all, then Geller's is to show which is better? I don't know....

 

 

I wasn't trying to be critical, Vickie, just trying to understand how the study will work. I don't know anything about Dr. Murphy, except what I've read on this board and all that has been positive. Still, I don't see how this study can be successful, but I'm no scientist.
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Amen, Michael!!!

 

I am so sick of hearing doctors use the word "anecdotal" as if it were an obscenity. In the real world, we all base our decisions on anecdotal or empirical evidence every day.

 

I appreciate that the scientific method dictates that controlled, double-blind studies are the best confirmation of hypotheses. But when you're dealing with terribly sick, tortured children - and there's overwhelming "anecdotal" evidence that something as simple as an antibiotic can dramatically reduce their suffering - that kind of study (as others have pointed out on this thread) is hard to justify.

 

Not Dr. Murphy's or Geller's fault. They're merely trying to confirm what they already know in a way that will satisfy the skeptics and provide "scientific proof" supporting the PANDAS hypothesis. But it makes me so damned mad that my son suffers needlessly for years, and I have to learn about the way to relieve his anguish by reading a book... and a book, not by a medical professional, but by a mom who went through the same nightmare with her son 7 years earlier. And I have to be lectured by a dozen local docs about how I'm in denial and just won't accept the fact that my son has a psychogenic movement disorder... no, OCD... no, Tourette's... no, some other generalized anxiety disorder. And all the evidence to the contrary (rapid onset after high fever, elevated ASO, PET scan, Cunningham test, improvement on steroids and after IVIG) is irrelevant.

 

Are you kidding me?!? I'm a software engineer, and if I dismissed that kind of evidence while troubleshooting a software problem, I'd get canned!

 

And I wonder if the reason some of the PANDAS experts don't publish their case studies is because they know that their reputations will be savaged in the same way Dr. Swedo's was... so vital clinical experiences don't get communicated to the rest of the medical community.

 

Sorry to rant. But if my son continues to recover and we get him back to health, I'm gonna raise as much ruckus as I can with the people who told us we were "desperate parents looking for a quick fix."

 

 

It's just a difficult situation, and really, I hope some day people will move away from the mindset that information isn't worthwhile unless it has been double-blind studied. Hopefully she will include a discussion on selection criteria and drop-outs, and be very careful with the analysis and conclusions. I think it's nice she's at least doing something, and would expect it to at least help the body of information.
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  • 1 month later...
I recently contacted Dr Murphy's office about her PANDAS/Cefdinir study. I heard they were in need of participants and I offered to post the study info in case anyone is interested in taking part. Dr Murphy is located in Florida. This is important to know since some in-office visits are required.

 

I only know what I am posting. If you are interested, please contact Jeannette M. Reid. Her contact info appears at the bottom.

 

So, I am cut and pasting the response as to not omit any information...

 

"The study investigates the use of antibiotic therapy in reducing symptoms presumed to be due to PANDAS. Children must be aged 4-13 years, with dramatic onset of OCD; anxiety; and/or tic disorders within the last 2 years. Children must be off other antibiotics for 1-2 weeks before starting the study. As well, a failed ‘correct’ trial of an antibiotic in the past is an exclusion criterion. (A correct trial is one at the right dose, and lasting at least 14 days.) The study will require 6 study visits (approximately every 3 weeks), which should each take 2-3 hours – as well as two follow-up phone interviews 1x/month. In the study, children will be randomly assigned to either an antibiotic (cefdinir) or placebo (an inert sugar pill)…so, each child will have a 50/50 chance of being on the antibiotic. Only one person involved with the study will know each child’s group, though the family would be informed at the end. While each child will, ideally, be able to complete the study, if there is no improvement by visit 3, Dr. Murphy will discuss pulling out for a different course of treatment. The study is free of charge – but out-of-study treatment would not be. Thanks!"

 

Jeannette M. Reid

Social/Behavioral Researcher

Department of PediatricsUniversity of South Florida

e-mail: jreid@health.usf.edu

office phone: 727-767-5583

 

Mailing address:

800 6th Street South

4th Floor North, Box 7523

St. Petersburg, FL 33701

Rothman Center phone: 727-767-8230

Rothman Center fax: 727-767-7786

http://health.usf.edu/medicine/pediatrics/...ndex.htm "

:lol:

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