Dr Murphy's PANDAS/Cefdinir Study

[thereishope]

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 "

[T_Mom]

(edited post)

 

Given what we "know" now, our family could not "go back" to that non-antibiotic state. I wonder about a double-blind study that involves "withholding" antibiotics for children who have been identified as having Pandas.

 

Albeit, if this study helps to establish an FDA approved protocol for kids that do have raging OCD/and/or ticcing which can be eradicated with antibiotics and/or steroids/IVIG/PEX--more power to them!

[EAMom]

Yeah...I agree T.Mom.

 

But if you're not on antibiotics already, and don't really know enough, or if you are having trouble getting your doc to prescribe long term abs in the first place, it might be a good route.

 

Also, perhaps "milder cases" might be inclined to do the study. Certainly if your child is in crisis mood, not functioning, not eating, not able to attend school, you're not going to muck around with a study where you have a 50% chance of no abs for 3 mo....unless you are clueless or just can't get a doc to rx out long term abs.

[Megs_Mom]

IMO a lot of people still have trouble getting long term anti-biotics - and many parents are hesitant to try them. Many docs are hesitant to prescribe them. It seems normal here on this forum - but in the "real world" it is a very different situation. I think this study and others like it are critical to the long term success of educating doctors on what they can do to help kids like ours. Honestly, those of us here are the "lucky ones". We need more studies entitled "Antibiotics proven effective in treating PANDAS". I need more doctors to be willing to help us - I live in fear that we will lose our doctors to this controversy.

 

That said, no way in heck, knowing what I know now, would I let Meg in this. But in June of 08 or 09 - I would have done this in a NY minute. At that time, no one would listen or help us.... We were begging for help. I considered moving to FL just to get therapy, never mind antibiotics. God that was a crazy time.

 

Anyway, I hope a lot more studies like this are started really soon. At least these children will be advised of a better option in 9 weeks. Last June, that would have saved us 12 long months.

[matis_mom]

Thanks for the info, but it seems like a such a risk! Who would ever put their kid at a 50% risk of not getting the prophilactic antiobiotic???

[thereishope]

I think it's important to remember that everyone is in different situations. If you are someone who cannot find a doctor to prescribe a prophylactic antibiotics (and there are those out there with that problem), you cannot travel to the handful of doctors that do help PANDAS kids ( but you live close to or in FL), you do not have the funds for out of network docs, have a high deductible you honestly cannot afford to reach, or not have the funds to pay for a doctor that does not accept insurance, if you are at your wit's end....it is may be something to look into.

 

If you are in that boat, it doesn't mean you don't love your child, it doesn't mean you are uneducated, it does not mean you're priorities are messed up.

 

For the record, my son is not participating in this study, but I don't want to judge those who choose to partake. Afterall, we will learn and eventually, hopefully benefit from this research.

 

So, granted if you choose to inquire, I would make sure your child is strep free, ask loads of questions and hopefully be brave enough to even post here and ask for help thinking of questions. For some the 50% chance of getting the antibiotic is worth looking into.

[nevergiveup]

Vicki

Are you seeing Dr. Murphy? I am glad you posted this study! There are so many parents in southern ohio who cannot get any treatment or help. At least getting in on this study would help the child. Doctors in Ohio believe PANDAS is treated with 10 days of antibiotics. Cleveland Clinic treats it as psychogenic and Cinc Childrens is just way behind on the science. Tampa is a 12 hour drive from here. Its not so bad I just did it last week with my daughter. Or the flights are cheap to TPA. Cefdinir is a great antibiotic and at high doses it put my dd in remission for over 2 years. She was back to twice daily Pencill when she relapsed. Vicki have you thought about preventative antibiotics?? If your child is not on abx because you cannot get them from your doc this is a great opprotunity. Cefdinir is very expensive close to 120 dollars every 10 days. Or 360 dollars a month not to mention a session with Murphy's clinic will set you back 200 dollars per hour. All free. Have you seen Gilbert lately? I cannot wait for the study results to be published. Think that may ever get Gilbert on board?

[thereishope]

Gilbert and my family have split ways. I truly try to keep negative things to myself, but he is confused and needs to figure out what he stands for and embrace it. The second my son had a huge setback due to allergies(which was only a couple weeks after a + strep test), Gilbert sent us on our way to the psychiatrist. I was then able to prove the direct connection but he didn't want to hear it. "Call me if he gets chorea" was the last thing he emailed me. I've tried to make nice, but he just stopped returned attempts to contact. So, no I do not think he will ever be on board unless a true revelation and urge of independence comes his way. Like I've said before, we don't know what goes on behind closed doors. Now that I stand here over a year since my original meeting with him and full of much more knowledge than I thought possible, perhaps some day I wil revisit him. whether it be through email, phone, etc. Let him know how my son is doing and just get rid of all the baggage I've built up over the last months towards him. But I'm always polite. Afterall, maybe, just maybe he will turn away from the darkside:)

 

No, my son is not part of this study. He is dong very well, even with a current sinus infection. No PANDAS symptoms right now! He wouldn't even qualify if I was interested:) It's just amazing.

[nevergiveup]

Vicki,

 

I also heard Dr. Murphy was doing an augmentin study? Do you know anything about that?

 

 

I am so glad your son is great.

 

I have thought on many occasions how to get the message to Cinc Childrens Hosp. I have thought of reconciling all the studies and data published into a binder proving and studying PANDAS, Busters insights, and immun docs insites and then taking that to the powers that be at Children's, what do you think? With all this tv press about OCD and pandas I bet Gilbert is going batty having to talk with the mothers.

[thereishope]

No, I don't know anything about an Augmentin study. Perhaps I will email them back and ask.

 

I am ready to go head on with Cinci Children's. If they got their act together, it would change how pediatricians in the area view "treating" PANDAS. But everyone, even w/in the hospital itself, refers to Gilbert. To them, he's god. One thing to do is I want to put together a packet, perhaps similar to a media packet. It includes things such as Buster's suggested NIMH revision, FAQ sheet, etc. I want to send this to local docs. It's a way of informing without being too aggressive to the point they become defensive.I also want to start the process of contacting local media outlets again.I live in Cincinnati so I contacted the Enquirer a long time ago along with the local, free family magazine, but never heard back. With all the publicity, I need to contact them again.

[Worried_Dad]

I thought the augmentin study for PANDAS was being led by Dr. Geller at Mass General? Is Dr. Murphy collaborating on that?

 

No, I don't know anything about an Augmentin study. Perhaps I will email them back and ask.

 

I am ready to go head on with Cinci Children's. If they got their act together, it would change how pediatricians in the area view "treating" PANDAS. But everyone, even w/in the hospital itself, refers to Gilbert. To them, he's god. One thing to do is I want to put together a packet, perhaps similar to a media packet. It includes things such as Buster's suggested NIMH revision, FAQ sheet, etc. I want to send this to local docs. It's a way of informing without being too aggressive to the point they become defensive.I also want to start the process of contacting local media outlets again.I live in Cincinnati so I contacted the Enquirer a long time ago along with the local, free family magazine, but never heard back. With all the publicity, I need to contact them again.

[T_Mom]

I am more positive this evening then when I first read about the study--sorry to offend anyone.

 

Truly, what we need is for someone to make their research focus a good retrospective study--of Pandas case histories, including bloodwork reports, symptoms and appointment documentation. That would tell the tale that time after time, apparently, inflammation triggered OCD and tics (Pandas kids) have had positive results with antibiotics, IVIG, and PEX

 

I believe that a "diagnosis" of Pandas can really only be made after episodes of symptoms and subsequent responses to treatments. Because there is little else to base an accurate diagnosis on (IMO) the results of any Ps study may potentially be confounded by definition.

[thereishope]

I wonder what Swedo plans to do with the PANDAS stories PANDAS Network will eventually compile for her to review, per her request?

 

In this study, I don't know how they will ensure if the child diagnosis of PANDAS is correct. I would think they meet with the child and parent before they begin to go over their health history. I think I read early on when my son was sick that technically a diagnosis of PANDAS could not be given unless the child experienced strep triggered exacerbations more than once. That is why it may still be considered rare. They have to wait for kids to get sick more than once and have it all documented before getting the official diagnosis. But, again, I don't know what the study requirements for PANDAS is.

 

 

I am slightly more positive this evening then when I first read about the study--sorry to offend anyone.

 

Truly, what we need is for someone to make their research focus a good retrospective study--of Pandas case histories, including bloodwork reports, symptoms and appointment documentation.

 

That would be evidence enough that time after time Pandas kids have had positive results with antibiotics, IVIG, and PEX.

You would think someone would be interested in THAT.

 

I believe that a "diagnosis" of Pandas can really only be made after episodes time and again of symptoms and subsequent response to treatments. Because there is little else to base an accurate diagnosis on (IMO) the results of the FLA study are potentially dangerous in my opinion, as I wonder--yet again, just how they will "determine" if a child truly has "Pandas"...that could certainly throw things for all.

 

I am sorry, but I have been through too much at this point to not speak up -- All the best,

[mom md]

Retrospective studies do not carry near as much weight with the medical community as prospective double blinded studies. I am sure this is why Dr. Murphy wants to do it this way.

[harmony]

I wonder what Swedo plans to do with the PANDAS stories PANDAS Network will eventually compile for her to review, per her request?

 

In this study, I don't know how they will ensure if the child diagnosis of PANDAS is correct. I would think they meet with the child and parent before they begin to go over their health history. I think I read early on when my son was sick that technically a diagnosis of PANDAS could not be given unless the child experienced strep triggered exacerbations more than once. That is why it may still be considered rare. They have to wait for kids to get sick more than once and have it all documented before getting the official diagnosis. But, again, I don't know what the study requirements for PANDAS is.

 

 

I am slightly more positive this evening then when I first read about the study--sorry to offend anyone.

 

Truly, what we need is for someone to make their research focus a good retrospective study--of Pandas case histories, including bloodwork reports, symptoms and appointment documentation.

 

That would be evidence enough that time after time Pandas kids have had positive results with antibiotics, IVIG, and PEX.

You would think someone would be interested in THAT.

 

I believe that a "diagnosis" of Pandas can really only be made after episodes time and again of symptoms and subsequent response to treatments. Because there is little else to base an accurate diagnosis on (IMO) the results of the FLA study are potentially dangerous in my opinion, as I wonder--yet again, just how they will "determine" if a child truly has "Pandas"...that could certainly throw things for all.

 

I am sorry, but I have been through too much at this point to not speak up -- All the best,

I remember that too- "diagnosis of PANDAS could not be given unless the child experienced strep triggered exacerbations more than once." That is what confused me about Sammy and Lauren. I guess maybe the criteria has changed. ???????