Iowadawn

There has been post IVIG times with ds12 when I have noticed a surge of hiccupping--within the first days following the IVIG. I think I have read (you'll have to look it up) that the control area for this would be in the basal ganglia. Somebody correct me if I'm wrong. I am just trying to recall what I read when I was trying to see if there could be some connection with the hiccups & PANS. Seems to me that it wasn't a stretch at all that there could be a connection. Dawn

Maybe I just missed it, but the NIH is very interested in these girls b/c the Neurology division is studying psychogenic movement disorders!!! I guess I was naive to think Swedo might be in the mix! They will get nowhere. There has to be a VERY BIG interest for the media to keep pressing the Goofy dx and giving little time to other possible causes. My heart sank when I read what the NIH was up to. Dawn

Mechtler has commented that he is referring patients who want a second opinion to a "world renowned expert in tic disorders at Rochester!! Oh brother!!

I read today that the NIH is now asking the girls to come to them for free testing. Dawn

Also, have you noticed that the diagnosis is continually & subtly "morphing" in the media as the heat goes up. Mass hysteria to conversion disorder and now a more "palatable" one of mass psychogenic illness. I saw a quote by Mechtler today saying the girls aren't experiencing mass hysteria---What?!! Dawn

Well, it was only a matter of time. I caught a story from today wgrz news that Mechtler has recommended the students go to a "world renowned expert in tic disorders in Rochester." That's Kurlan or Singer? Oh brother. Dawn

This guy doesn't deserve to have the title "Doctor"!! Just a little sleuthing, b/c I tend to analyze too much. Mechtler & Mink (of K & S in Rochester) happen to sit on the editorial board of the American Neurology Association. Just a Hmmmm Hmmmmmm. Dawn

This does sound like what she has going on on her back and legs. Has he had a positive bart test or is it a clinical diagnosis? What is he taking for his bart? His bart titer came back positive, but not too far positive--if that make sense. (His babesia FISH was positive). We were several months into tx for lyme & co. when the rashes showed up. When we added Grapefruit seed extract---and then an IVIG--the rashes came bigtime--and so did the behavior. Nasty. Oral Colloidal silver spray is one thing we are using against it. Rifampin is the other.

My boy's bart rash on his back looks like fine, somewhat interrupted, scratches, only all the redness is below the surface. In fact, he is experiencing some of these now. His back was full of them at one point earlier this year. They do not look like stretch marks. These have been coming and going. Dawn

Just something that popped into my head: What in the heck does a neurologist have any business making a psychological dx? That is a pretty big leap in fields. Kurlan & Singer have indoctrinated this dude as far, as I am concerned. Dawn

Hawks- I am in the process of loading up for bear for our IVIG pre-auth. I am using thenMama's EXCELLENT appeal letter template. It is awesome. Our doc said we can include the info with the pre-auth in an attempt to avoid a denial. I'll save some ammo in case a denial does happen (wouldn't be a surprise). Dr. K said one time to ask them--"you don't like what our doctor is using, then WHAT DO you propose we use. He wants to know!" I also like to throw at them the whole list of drugs NOT EVEN APPROVED for use in the pediatric population, let alone for the conditions and they have NO problem covering these. I am mostly going to include the scientific info and how IVIG has been the most efficacious of ANYTHING we have tried. Gotta run. Dawn

I really doubt she will after the comment our LLMD just rec'd back from Kathy. They are bound by the IR-(and some other letter) and can not give reports to parents or physicians, who have use them in the past to dx. This is not part of what they can do in their research. I think doing this would seriously jeopardize their research abilities. I have a feeling they went out on a limb with the 1000 or so she did for us and then issued us reports. She may be a bit under the microscope by whatever regulating body this is. Just MHO. Dawn

We have used Namenda at 10mg bid for some time. Side effect profile is good as meds go. Helps with focus, flexibility, cognitive stuff. But, I tell you, our list of med failures is as long as yours. It has been very hard (our psych said our son has been one of his top three in difficulty)to find something that works, or works for very long if he just isn't operating on all cylinders--like now--only IVIG seems to help the most. He said psychiatric problems with infectious etiologies are very difficult to get good med results. Dawn I had to look up Lyrica. We were on gabapentin (Neurotin), which appears to be similar to Lyrica. Actually pretty pleased with results. Lower on the sise effect profile for us, too. But, ended up changing things up after a while. Both could be worth a shot. I was more comfortable with these two drugs vs. some of the other ones we tried.

Now, is there a connection to Kurlan & Singer? Dawn

Gupta appears to practice at the same place that Dr. Mechtler practices-Dent Neuro Institute. Maybe this is "not news". he certainly will not go against what a colleague says. Just a thought. Dawn

Well, I wonder if there are variants of PANDAS or variants of SC that might not fit neatly under 1 diagnosis or the other, depending on the strain of strep or other things. Technically, if these girls do have PANDAS/PANS (assuming this isn't their first episode) then this must be some sort of teen variant (onset after puberty). Also, Cam Kinase can vary...my dd's was in the high PANDAS range when not in an exacerbation, but was in the high SC range (after H1N1) when in an exacerbation. We did have an echo, and her heart was okay. So, we are still in the PANDAS camp (the only thing that made us think SC was her high cam). Plus, our dd didn't have severe movement issues like these girls, she had OCD/anorexia. Our 15yo dd, at the time (17 now) was dxed by Dr. K with the adolescent variant. Screaming titers, stomach pain, anxieties,fear of throwing up, mood lability. No mvt stuff, though. Dawn

They know that, too. I sure hope the real experts" are getting to them and helping.

Do you realize (rhetorical question!) the PANS-dora boxes & CANS of worms that would be open if/when their tops are blown off??! And they know know it. Including the entire vaccine/autism debacle debate. Having a tough time with our son---had to say something lite. Dawn

You heard right, EAmom. 9 months. Double Grrrrr here, too. These docs are trying to do damage control before the fan is turned on HIGH. Dawn

No wonder she is spotting all the psycho-babble about "conversion disorder" and sounding like she does believe it. She has found out how to make money---she needs to see real patients. She has "rock star" status. Psycho-analyst?? She appears to be more psychologist than psychiatrist. We see both--we just happen to have good ones! Thank you Dr. T for helping!!! Dawn

Sad, sad report. Where did they pull this doctor from? There has been docs that have reached out. Can I scream!!!!! Dawn

Again, I'll say, I truly believe (partly based on what a doc told me after the big Pow-Wow) that they know they are toast and they are "trying" to save face BEFORE the whole PANS thing hits the fans & they look foolish. "CANS .... PANS .... AAhh... We aren't that far apart. Let's now all get along. Picture, please." is what I truly think is their conniving scheme. Makes me SICK. Dawn

You say "persons involved." Does that mean the affected families. Sorr, if that is a dumb question, only b/c the "big wigs" out there are brushing off help. Dawn

I just fired off an email to an Evan White who has been following this story on WHAM 13. I have written him before when the story was new and he has replied. I implored him to be a hero & do some serious investigative reporting, outlining some reasons why, also including names of researchers that could help. He has an email address listed with his story, so I used it. Just an idea. dawn

Can someone get to Swedo or Cunningham or Leckman--he's a tic guy. Would they be able to get to the parents or school officials. Anybody have a hotline to them? Dawn