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cam kinase II score is 186

 

normal control 92

positive serum control 256 (to ensure test running correctly)

 

Is really the only take-away the 186 number, and compare to chart 3a, looks a lot like PANDAS, not surprised, only question now is what we can do with me. (Assuming the 92 and 256 don't provide any useful information.)

 

Dr. K. is willing to work with me, has worked with a couple dozen post-puberty cases, but needs a local doctor to prescribe and go along. I am going to an integrative MD, second office visit Monday next week, and we'll see if he can/will, but may be a bit over his head, who knows. My other thought is an immunologist, perhaps he can recommend, or perhaps anyone here has a good idea on how to find an immunologist in the Tampa/St. Petersburg/Clearwater Florida area that might make sense for this situation.

 

Michael

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Michael, Amazing... I am so glad you tested yourself. I would try Tanya Murphy in Tampa and see what she says or perhaps have a referral for you. Definitely, see an immunologist and test to see if they suspect underlying infection; WBC, RBC, CRP, ESR, Strep Antibody Titers and IgG Subclasses. How long have you suspected PANDAS? Do you remember a recent illness that might have kicked it off.

 

BUT, if Dr. K is willing to work with you.... why not head to Chicago!!!!

 

Wow.

 

-Wendy

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Does she have samples it is compared to of non pandas adults?

 

I know what you mean about that relief but unsettling feeling. I felt that way with my son's results... at first I was glad to see I was not crazy in thinking it was pandas but then I felt sick to my stomach that it was pandas. Sort of a double edge sword but at least you have something to work with now. Best of luck!!

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Yes, speaking through the telephone assistants, Dr. Murphy will only see kids, and for a referral, just said to go to the nimh website, yes, the one that says that PANDAS is by definition just for kids.

 

I have always had this situation, back to a childhood that had many sore throat episodes and some cold episodes. But just diagnosed with Tourette's a year ago and just seroiusly considering PANDAS a few weeks to a couple months ago.

 

Was really looking to establish relationship with someone local enough to give treatments if/when necessary, but willing to take Dr. K.'s experience into account as his 2-dozen adult cases may unfortunately be the best there is out there. Hearing of others success with immunologists, was wondering about that, and remembering Dr. Bradstreet in Melbourne, Florida. That's a few hours away from Tampa, maybe not too bad for an occasional visit. Their website does give some discussion of immunology ... for those who have gone to Dr. Bradstreet & co., do you feel they are strong with the immunology knowledge?

 

My CamK results were not specifically compared to adult samples. Generally, they said there aren't adults in the study, so they wouldn't be able to really do that. Now, there was one poster here who was an adult and got tested also, and got a more "normal" score, so, I'm not quite the only adult tested. But, still, it was just treated like the kid samples. That's the thing, you really don't know how adulthood could change the score, but, the score does seem capable of being PANDAS or normal. For me, the CamK, for what it's worth says PANDAS, and the symptoms definitely match PANDAS seriously well, and so it seems time to move on to assuming it's PANDAS until other evidence emerges that suggests otherwise.

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Yes, speaking through the telephone assistants, Dr. Murphy will only see kids, and for a referral, just said to go to the nimh website, yes, the one that says that PANDAS is by definition just for kids.

 

Ohh...that lame website. When in reality, the definition says childhood onset...the NIMH website can't even get that straight!

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Michael,

Are you able to see Dr. trifiletti? Found this on PubMed, bolding mine:

 

J Child Neurol. 2006 Sep;21(9):727-36.

Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants.

 

Pavone P, Parano E, Rizzo R, Trifiletti RR.

 

Department of Pediatrics, Division of Clinical Pediatrics, University of Catania, Viale Andrea Doria 6, 95125 Catania, Italy. ppavone@mbox.unict.it

 

Streptococcal infection in children is usually benign and self-limited. In a small percentage of children, prominent neurologic and/or psychiatric sequelae can occur. Sydenham chorea is the best defined and best recognized. PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection) is a well-defined syndrome in which tics (motor and/or vocal) and/or obsessive-compulsive disorder consistently exacerbate in temporal correlation to a group A beta-hemolytic streptococcal infection. PANDAS constitutes a subset of children with tics, Tourette syndrome, and obsessive-compulsive disorder. In addition to strictly defined PANDAS, we and others have recognized several PANDAS variants, including adult-onset variant, a dystonic variant, a myoclonic variant, and a "chronic" PANDAS variant. The nosology and classification of these entities are rapidly evolving. The recognition that some pediatric neurobehavioral syndromes have infectious and/or immunologic triggers points to important new avenues of disease treatment. In this review, we summarize this complex and rapidly evolving area of clinical research.

I know you had pediatric onset, but sounds like he may be at least a little familiar with the adult variant.

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Do you have your appt with Dr K scheduled yet?

 

I'm curious, do you have any nieces or nephews that have showed any signs of possible PANDAS? Have you shared your findings with relatives yet? What was their reaction?

 

Best of luck to you. Keep us updated!

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Dr. K says he has experience with a couple dozen after-puberty cases, and I was figuring that was going to make him more the expert than Dr. T or Dr. L. I thought Dr. T was just still setting up, so couldn't have that much experience yet. That was my thinking anyway. Dr. K will not be able to make any prescriptions, so I am really needing a local person, and so I haven't bothered to make an appointment with him yet until I figure out the local person. Considering Dr. Bradstreet's group in Melbourne Florida, will call them on Monday to see their willingness/abilities. Also will discuss with my new integrative MD to see if he thinks he can handle or recommend an immunologist. So, that's where that hunt is right now.

 

Regarding othe relatives (nieces/nephews), you can always find a sign here and there if you are really looking, there are so many. But, none of them really stand out as looking like that. One niece literally had strep about 1 week before Thanksgiving when they came down to visit. She had been on antibiotics for about a week, and showed no visible signs at the time. I did come down with a bad cold, but that could also easily be due to compromised immune system from all the wireless in the disney park, it was quite brutal for me. Discussed the PANDAS with my mother about a week ago, no real reaction to speak of, she was just taking it all in, as it was all a very new look at things. She really does not remember me as being a problematic child. I do think the rage attacks were very infrequent, and she was lucky enough to not be there for some of them.

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Dr. K says he has experience with a couple dozen after-puberty cases, and I was figuring that was going to make him more the expert than Dr. T or Dr. L. I thought Dr. T was just still setting up, so couldn't have that much experience yet.

 

Dr. T. has seen many many (hundreds?) of pandas patients. He's just setting up his private practice (used to be with university hospitals etc). His name is on a lot of academic/scientific articles on pandas.

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cam kinase II score is 186

 

normal control 92

positive serum control 256 (to ensure test running correctly)

 

Is really the only take-away the 186 number, and compare to chart 3a, looks a lot like PANDAS, not surprised, only question now is what we can do with me. (Assuming the 92 and 256 don't provide any useful information.)

 

Dr. K. is willing to work with me, has worked with a couple dozen post-puberty cases, but needs a local doctor to prescribe and go along. I am going to an integrative MD, second office visit Monday next week, and we'll see if he can/will, but may be a bit over his head, who knows. My other thought is an immunologist, perhaps he can recommend, or perhaps anyone here has a good idea on how to find an immunologist in the Tampa/St. Petersburg/Clearwater Florida area that might make sense for this situation.

 

Michael

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