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What are the reasons that non-believing Dr.'s give?


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I thought I should prepare myself before our first appointment...JUST IN CASE.

 

When dr's have been found to say they do not "believe" in PANDAS...what are the most common reasons cited? What should I be prepared to hear? I already had to cancel my son's first appt which was scheduled for tomorrow as upon further questioning I discovered that dr. treats patients WITH PANDAS...but they don't TREAT patients FOR PANDAS. Nice....

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Three years ago we saw a rheumatologist, and while he didn't say he didn't believe in PANDAS, he said my daughter didn't have it because its very rare and her ASO titers were not elevated. There has been a lot of new research since then and we saw him again last November, with our Cunningham results and the newer studies. He was more receptive this time. After calling Dr.s Cunningham and Latimer, he decided that treatment was experimental at this point (other than abx, which he was willing to prescribe 3 years ago) and referred us to Dr. Latimer. I think at this point, while there is lots and lots of anecdotal evidence about treatment, there are very few studies about actual treatment efficacy. Many doctors are uncomfortable with that and stick with standard (often ineffective) treatment for OCD and tourettes.

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Three years ago we saw a rheumatologist, and while he didn't say he didn't believe in PANDAS, he said my daughter didn't have it because its very rare and her ASO titers were not elevated. There has been a lot of new research since then and we saw him again last November, with our Cunningham results and the newer studies. He was more receptive this time. After calling Dr.s Cunningham and Latimer, he decided that treatment was experimental at this point (other than abx, which he was willing to prescribe 3 years ago) and referred us to Dr. Latimer. I think at this point, while there is lots and lots of anecdotal evidence about treatment, there are very few studies about actual treatment efficacy. Many doctors are uncomfortable with that and stick with standard (often ineffective) treatment for OCD and tourettes.

THey've said that its controversial and the feeling I got is that they don't treat anything controversial.

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I thought I should prepare myself before our first appointment...JUST IN CASE.

 

When dr's have been found to say they do not "believe" in PANDAS...what are the most common reasons cited? What should I be prepared to hear? I already had to cancel my son's first appt which was scheduled for tomorrow as upon further questioning I discovered that dr. treats patients WITH PANDAS...but they don't TREAT patients FOR PANDAS. Nice....

 

 

about a year ago, i spoke with the assistant of a rather prominent crtic in the field. we DID NOT go for an appt and we DID NOT speak to the dr. himself, so this WAS NOT directly from the dr . . . i was told he believes the science does not appropriately support the pandas theory.

 

just my opinion -- i think most think it's a rather rare condition -- with which i compeletly do NOT agree.

 

other drs -- including our ped, whom i really like but am not relying on to treat pandas -- believe it can be brought on by strep and other infections but now that it is here, you treat what you see. this is simply symptom management without treating root causes -- just what you say treating WITH but not FOR.

 

but, i also believe symptom management vs. root cause is a major problem with our health care in general, not limited to pandas.

Edited by smartyjones
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For the high level neuro's, it comes down to this.... Many kids have tics, many kids have ocd, and pretty much all kids have strep. So without blood markers of specific antibodies, how can they differentiate panda kids from all other children with tics, ocd. If you want to eliminate this argument, come with cunningham tests showing brain antibodies and cam kin two activation. It always makes for a more interesting meeting with the naysayers. Clearly if ur child has pandas, and u go to a non pandas expert, u cannot expect to be treated for pandas. How can they a treat a disease they do not understand? I like to tell everyone this... I took my dd to a neurologist and I got clonodine and haldrol recommended, I took her to a psychiatrist and they offerred prozac type drugs, I took her to an infectious disesase and they offered abx, I took her to ears nose and throat and they offered a tonsillectomy, I took her rheumotology and they gave us steroids, and then I took her to a pandas doc,and i finally got a more comprehensive plan of action, better abx, ivig, plan of action if she deteriorates for pex, and a lot more reassurance that someone is truly looking at the whole child and this illness. Its truly ur choice, if u know this doc doesn't believe in pandas or even if he does, if he doesn't have a treatment protocol, u are wasting ur time. Years past we had to fight hard just for abx, now several experts exist and our job is to take care of our children and be there for them, this fight for care will distract u from time with ur child. Once the white paper is published, and the new study is done, these docs will fall in line they have no option. Convinving a naysayer is a noble cause but somewhat uneccessary now. Fund raising, awareness and caring for our children is what I see as the next battle worth tackling.

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For the high level neuro's, it comes down to this.... Many kids have tics, many kids have ocd, and pretty much all kids have strep. So without blood markers of specific antibodies, how can they differentiate panda kids from all other children with tics, ocd. If you want to eliminate this argument, come with cunningham tests showing brain antibodies and cam kin two activation. It always makes for a more interesting meeting with the naysayers. Clearly if ur child has pandas, and u go to a non pandas expert, u cannot expect to be treated for pandas. How can they a treat a disease they do not understand? I like to tell everyone this... I took my dd to a neurologist and I got clonodine and haldrol recommended, I took her to a psychiatrist and they offerred prozac type drugs, I took her to an infectious disesase and they offered abx, I took her to ears nose and throat and they offered a tonsillectomy, I took her rheumotology and they gave us steroids, and then I took her to a pandas doc,and i finally got a more comprehensive plan of action, better abx, ivig, plan of action if she deteriorates for pex, and a lot more reassurance that someone is truly looking at the whole child and this illness. Its truly ur choice, if u know this doc doesn't believe in pandas or even if he does, if he doesn't have a treatment protocol, u are wasting ur time. Years past we had to fight hard just for abx, now several experts exist and our job is to take care of our children and be there for them, this fight for care will distract u from time with ur child. Once the white paper is published, and the new study is done, these docs will fall in line they have no option. Convinving a naysayer is a noble cause but somewhat uneccessary now. Fund raising, awareness and caring for our children is what I see as the next battle worth tackling.

 

WELL SAID! Couldn't agree with you more.

 

MakeMinTea...find a believer...don't waste your breath on anyone who will be wasting your time...precious time to get your child the much needed help they need! Keep fighting Mom...you are doing a great job :)

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