Iowadawn

This better get in the mainstream news. This is ridiculous. Dr. CD must not know about our tight forum.

Ha ha...the Dent docs and the Batavian! Does anyone know if Dr. Swedo happened to renew her subscription to the Batavian? Maybe we should all spring for a complimentary subscription for her!!

Is anyone close enough to Dr. Swedo to know if she knows how he's using her name and if she still or ever did go along with CD? I wonder if wayyyy at the beginning she thought the CD dx fit, and Dr. CD is not letting go. Has any girl gone to her? Has Dr. T been in contact with her. Seems the only people keeping this in the news & doing extensive interviews are the DENT doctors.

I read tonight that the Dept of Health now updated that 8 of the original 12 had HPV vaccinations. The proof will be in the pudding if the girls make improvement on the abx & steroids. Without all the counseling therapy.

I will find where I read this tonight. Boy, Dr. CD is really VERRRRY upset. Why????!!

You know usually the person making the MOST noise is the one with the problem. Dr. T has really only made ONE comment about the CD dx--a bunch of garbage. Now Mechtler is ALL OVER Dr. T's conclusion. He "knew that this would be his conclusion" and the tx will have the placebo effect & on & on----why does he HAVE to get so riled up. Dr. T, just don't get in the mud. You'll come out looking much better. So....WHere is Dr. Swedo?? Let's hope Dr. T & Swedo are talking!!

You know, I wonder if Dr. CD is confusing the folks at the NIH with the Dr. Swedo & Co. at the NIMH. I read a story tonight that states the NIH is standing by the conversion diagnosis. Let's hope he is bright enough to realize they are two different groups!! I would put money down on this being where he gets that Swedo is on board with the dx. I have a feeling some bottoms are feeling a bit warm and major twitching is beginning to occur.....By Golly!! I just diagnosed my first case of Conversion Disorder. Definitely stressed induced movement. I couldn't resist. I'll quit. Dawn

Ditto on convincing the docs. You MIGHT get a doc here in Iowa to get the diagnosing aspect of it correct, but he is way behind in treating. Make an appt. with Dr. K in Chicago. That is where we ended up. RUN, don't walk. PM at anytime. Dawn

I'll try this again. One of the girls is raising her own baby. Now, that would be a stressor for a teen in high school.

One of the girls noted on TV that her stressor was a grandparent dying last year. I think by the time a child is 18 he/she has experienced the death of a loved one. Yes... it is difficult... but if that qualifies as a "significant" stressor, then there are NO daily life events that would seem off limits, so really anyone would meet criteria for this diagnosis. One of the girls is raising a baby. Now, that I would put in the stressor category for a teen. Yup, or a parent's divorce, or someone gets bullied, or doesn't make the soccer team. These things happen to teens all the time all over the country...

I am looking now, but I believe it was at a 2006 UCLA Davis MIND Institute Seminar where she gave a lecture on how there seems to be 3 distinct types of symptoms that help pinpoint a region of the basal ganglia that may be affected. Dawn Yes, at about the 20 minute mark in her lecture she speaks about different antibody responses to different regions of the basal ganglia. This is an excellent lecture. The people gathering info in the Leroy girls could learn A LOT about how important history gathering is. Perhaps someone could provide a link for this. Dawn Is this it? http://www.ucdmc.ucdavis.edu/mindinstitute/videos/video_tox.html (you have to scroll down until you get to Swedo) Yes.

My knee-jerk reaction after reading this article was: Whoa. Why is this JUST now coming out about Swedo and all the "unreported info." Seems Dr. CD is doing his part in keeping the media Frenzy going!! Maybe he should shut up or lay as much information HIPAA will allow (and it seems to be plenty) all out on the table and then return to the confines of his nice office and refuse to issue any more statements. Dawn And BTW, where is Dr. T and his results? It has been a while.

No joke. Just read it a couple minutes ago in 2/5/12 Batavian. This can't be. And she is to be on Dr. Drew on Monday or Tuesday to go on record as going along with the Conversion diagnosis. Dawn

I am looking now, but I believe it was at a 2006 UCLA Davis MIND Institute Seminar where she gave a lecture on how there seems to be 3 distinct types of symptoms that help pinpoint a region of the basal ganglia that may be affected. Dawn Yes, at about the 20 minute mark in her lecture she speaks about different antibody responses to different regions of the basal ganglia. This is an excellent lecture. The people gathering info in the Leroy girls could learn A LOT about how important history gathering is. Perhaps someone could provide a link for this. Dawn

I am looking now, but I believe it was at a 2006 UCLA Davis MIND Institute Seminar where she gave a lecture on how there seems to be 3 distinct types of symptoms that help pinpoint a region of the basal ganglia that may be affected. Dawn

Didn't Dr. Swedo, in one of her presentations, talk about where on the basal ganglia the autoimmune reaction is occurring--caudete, putamen, striatum--may determine the symptom presentation. Just thought I had heard her mention this. Chime in. Dawn

Very, very good.

Ditto. Do you think it would work to get into Swedo if I said we JUST moved to Leroy!!??

WOW!! Two governmental branches working together!!

But, out in Diana P's neck of the woods in CA they had a big OCD explosion after strep-- 3-ish years go?. She had to get in Stanford's face. This is really when the movement in the PANDAS community really started to snowball. Those that have been around for some time, chime in, please. This was "before" Dr. T.

I'll bet that's why Dr. Conversion Disorder believes PANDAS is "exceedingly rare". He's too busy misdiagnosing it as Conversion Disorder! I completely agree that it is TOTALLY scary that he diagnoses Conversion Disorder every 2-3 days. I feel (only a little) for that young neurologist. She is being used like a husband that does something to trash his marriage and then grabs his wife and gets in the cameras--"Lookie, everyone. Even my wife will stand by me after this awful thing I did to totally embarrass her & the family." Makes me sick. She is getting brainwashed. If she is smart, to save her career, she would bolt while the bolting is good (after she apologizes!) 2 to 3 cases a WEEK!!!! MHO

Bear in mind, the newest proposed criteria from Swedo (I've seen it on one of her slides) includes environmental factors as a cause for PANS. PANS is the big umbrella, underneath an more specific PANDAS, PITAND, Environmental/other. They were aware way back in the late 90's that strep wasn't necessarily the only trigger. Dr. Swedo just felt it would be the easiest for the medical community to embrace or swallow. Last summer, seeing that the medical establishment was getting hung up on "proving" the strep (etiology), there was consensus among the doctors/researchers in the trenches, that it would be more productive to go this new route. Those more in the know can elaborate or correct me. I have seen the slide decks Swedo has used regarding the shift to PANS. It is available on-line. Dawn

Just a little good news. Our ds12 (all but 13!!)has been in need of Ivig again. It hasn't been good. The open approval BCBS begrudgingly approved for a year had expired in Dec. We went loaded for bear and tried to avert a denial in the first place. Using info Thenmama had prepared, especially the scientific literature details (I saved back some ammo in case we needed to appeal, etc., along with our note on how it has helped him, how they have ok'd it in the past, how they seem to pay for all the drugs that are NOT even approved or tested for use in kids his age (and don't really work) and IVIG is proven safe by the FDA ,etc. Well, we just rec'd word that BCBS has approved IVIG for one year!!! Evan is currently in patient again. He needed to be admitted last Thurs. We have had to retain an attorney for us, as the state is getting weird after the police chief sucker punched us and ran to the county attorney after the ambulance run to the hospital. It was a very rough admit & transport. Evan has been to this hospital many times and the psychiatrist has been very understanding and gets the infections & brain thing. Just wanted to pass along what worked for us!! Dawn

Yeah, we know Dr. E. We abandoned Dr. E. We see a Dr. P in Grinnell. LLMD. We are a congenital Lyme & PANDAS case. PM me. Where do you live!! Another Iowan. Dawn