JAG10

Seigal, who originally supported PANDAS, wraps up the whole story while giving all the doctors a gold star. Now, no matter what happens, the story has been written...even including Dr. T's "good, caring intentions creating a placebo" http://video.foxnews.com/v/1439850629001/mysterious-illness-in-leroy-new-york-stumps-doctors

I would have thought that too. I took this 5MTHF for a while, but am off it. I use energetic testing that indicated it would be helpful and now that it would not be. Perhaps this is a sign of being in better health and having less to detox or less conversion needed. I have one copy of each of the two genes that are mainly tested. I have read these mutations impair certain pathways, slow things down or limit things, but do not absolutely mean they do not work at all. And of course having two copies of a particular mutation is going to be much worse than having just one copy of it. I think it was something like you work at 50-60% efficiency with one mutation of a gene, but 20-30% efficiency with two mutations of a gene. That's very interesting! Did you notice or feel any difference or were you following the results of the testing mainly? How many mg of the Thorne did you take when you were taking it?

When the MTHFR gene mutation is present, I would think supplementation to bypass the kink in the loop would be lifelong and not something that you can fix or restore because your genes aren't to change. We are also using the Thorne MTHR and will have the testing run in a couple weeks.

Amen! I hope the reporter abbreviated her statements. If that was all she was going to contribute, I don't think she did anyone any favors here. EAMom is absolutely right- OF COURSE Trifiletti put together a clinical picture/diagnosis!!!! All her statements did was highlight that no single piece of criteria equates to PANS dx. He can't go back in time; all he can do is what he is doing, choose his words carefully and hope they respond positively to treatment so the DENT duds can say they got better because they "believed" in Dr. T. They've set the stage so there are escape hatches regardless of the outcomes.

Can someone please explain to me (simply if possible) what a conjugate vaccine is? Are these the only conjugate vaccines currently "on schedule": Hib, PCV7 (after 2000) or PCV13 (after 2006?) and MCV4 So that's Haemophilus influenzae type b, pneumococcal vaccines and meninggococcal vaccines? Anything else? What about voluntary vaccines? Which ones are conjugate? If your child had a failed response to Hib and PCV7, doesn't that make MCV4 even scarier than non-conjugate vaccines? Maybe I'm just really confused on the issue....

I mentioned in another post, we've had 2/7 schools in my district near Philadelphia with several rooms closed off due to mold from the incredibly wet summer/fall/winter. This has never happened before in all the years ive been there. Plus I wonder if the quake created miniscule crakes allowing moisture and mold into places previously sealed off. We have one teacher in my elementary who has been in the hospital for several weeks due to lung complications from the mold. It certainly seems worth exploring when you consider the timing.....why now? Why this year when the environmental disaster occurred over 40 years ago? Or perhaps all the water just brought the toxins to the surface. Perhaps the girls' story is giving more people courage to come forward.

and In regards to PANDAS specifically, maybe not mylein and maybe not autism, but an immune system which could be sensitized to carbohydrate recognition at a young age might have implications. Kim, I don't know how or if this fits in the picture, but when we had our initial consult with Dr. B, he ran many labs. My dd12 had a failed response to both Hib and 13/14 serotypes of strep pneumoniae. I asked him if there was any common thread he saw among his pandas patients and at that time (11/2010) he said 99% fail at least 10 serotypes. Up until that point, she was fully vaccinated, yet he tested for titers to strep pneum., Hib, and tetanus (her tetanus titer was fine). It is common knowledge on this board that he gets many of his patients covered for iVIG because they have a failed response to strep pneumoniae which we know is not the same thing as group A strep. There must be some reason he knew to look for that specific response and why there is such a high percentage of failure among kids with PANS. This issue of the response to the 14 serotypes of strep pnuemoniae has been discussed here quite a few times and there are some who say their kids demonstrate immunity response, so that 99% number is doubted, but it is still likely a very high percentage. I'm not as sure about the Hib.

Thanks! My eyes gazed over the double negative.

Thanks! My eyes gazed over the double negative.

"As a physician I'd be extra careful,” he said. "Whatever rare possibilities are there should not be unexplored." He meant should be explored.....right?

If anyone is interested, there is a free Wine and Cheese showing of The Greater Good movie with physicians who specialize in vaccines attending to answer questions. In Bethesda, MD https://www.facebook.com/events/249781821760080/

When my dd was 7 (now 12, oiye) she was on Abilify in 2nd grade. Was also on very low dose, as the psych put it "enough for a goldfish." Well, 10 days into it, she dropped to the floor upon standing (syncope) two days in a row. We took her off, had a neuro consult with a negative EEG and concluded it was the Abilify. She wasn't taking it for tics, just overall neuro mess; off the walls ADHD, OCD, all of it. It did calm her, but cognitive blunting was also a problem. I would also give it more time if you can.

Hi Kim- This is an interesting discussion; I wish I understood the fundamentals better so I could contribute some educated speculation. I mean, I still don't understand how one produces mass quantities of antibodies and is immune deficient at the same time. But what you are thinking is that these early, numerous vaccinations could interrupt the necessary training that the baby's immune system needs to encounter so that the Th2 activity does not become persistently dominant? I'm not sure what I would do if I could go back in time, which we obviously can't. This is all so complex and honestly, I would estimate generously 90% of parents could not figure this out on their own and determine their own vaccine protocol. I would not have the confidence that I was coming to the right conclusions. I'd probably throw my hands up and say "Give her the same 10 shots I got in the same order at the same ages" and cross my fingers. Of course then I'd probably worry that maybe those 10 really were harmful but it isn't evident until the next generation. On the other hand, would anyone be as sure in the decision not to vaccinate at all if that same philosophy was dominant and there was no "herd immunity"? You can torture yourself all night long like this. I don't want to beat myself or anyone else up about what is already done. I just want to make smart choices now and do whatever is possible to correct what can possibly be corrected.

Kim, Is this saying that the skewing toward Th2 activity due to vaccines "cheating the immune system of learning its lessons properly" results in limited production of antibodies or over production of antibodies, or both? If both, why? Why do we have kids half of whom produce way too many and half of whom don't produce hardly any antibodies?

Ah, Michael Jenike.....I'm in love. Get this guy a microphone, PRONTO!

I like that name, "Dr. Conversion Disorder and his minion" ....that is what I assumed as well. I don't think Dr. T is claiming that these girls have PANS/pandas yet. He is stating that it is a plausible diagnosis based on what he knows thus far and worthy of investigation. He is willing to look at all the possibilities. He has respectfully stated that there are possibilities (from his point of view infectious-based) that have not been excluded BECAUSE THE PREVIOUS PHYSICIANS NEVER LOOKED either due to ignorance or arrogance. These physicians are entitled to present the pros and remaining questions regarding PANS but to call Dr. T fanatical is unprofessional, mean-spirited and low class behavior unbecoming of their profession. That said.....if it turns out that the Le Roy students do not have PANS (but something else besides Conversion Disorder), I certainly hope this is not used as a sword against the legitimacy of PANS. Dr. T is not saying they have it without some lab results to back him up or without firm evidence of the patients' immunological profiles.

Wait....I know there is a whole group of folks here whose children never run elevated titters and are more concerned with whether they are rising or not. My girls do run elevated titters, so I might not have paid as close attention as others here. But hopefully, a veteran will chime in soon.

Did Dr. B do the stool yeast test? No, but I don't know that he wouldn't. When I see him in 3 weeks, I will definitely discuss it with him. From what I've been reading, it's not uncommon for people with yeast issues to not be identified by the stool test......which makes me think she must be pretty bad if she was. Many yeast fighting practioners would assume our children have yeast problems for the simple fact that they are chronically on abx.

Two more weeks until the results will be in....maybe sooner. I wonder if he did any swabs/cultures? He has to be very careful under this microscope. Couldn't start anyone on abx "just in case."

Dr. Mechtler also said he's recommending a world-renowned expert in tic disorders in Rochester for the families to see for a second opinion. "The three of us would like to work together if obviously the children decide with parents to come back if they still have faith in us." Don't most people want an independent second opinion? Most people won't even share the first doc/therapist's report just to see if the second one reaches the same conclusions independently (kinda hard when you're all over the national news though.) I'm not as smart as Mechtler, but my guess is that NO, they no longer have faith in you, NO they don't want you speaking about their children on TV any longer and NO they don't want your collaboration or recommendations.

I guess this would have been revealed if a common thread, but it seems like many of these girls were cheerleaders.

Tried to PM you but your ox must be full.

The symptoms I am referring to with my dd12 are behavioral regression which looks like "love drunk" not raging in my girl and cognitive blunting which looks like lots of careless errors, great difficulty with multi-step processes and slow cognitive tempo. The IVIG would resolve all the OCD and tic related issue and improve the cognitive issues to a point. Mind you, we have done many IVIG treatments and Dr B pretreats with prednisone to prevent headaches. What I noticed is that immediately following IVIG and prednisone, my girl would be 100%, but then after a week or so, fade to 90%. It was the prednisone reducing the inflammation to reveal her true self. We even did a three week taper of steroids and the same thing happened, clear as a bell on the prednisone, faded after a week or so. The question was....what was causing this low-level inflammation preventing maintainable full recovery? When new, sweet doc recommended testing for yeast (just like so many here had suggested since I joined) I smiled politely, nodded my head, but inside was like 'oh brother, another yeaster!' I thought if the steroids made the symptom go away, it couldn't possibly be yeast-WRONG!!!! I WAS COMPLETELY WRONG!!! I apologize to anyone who made that suggestion and I rolled my eyes on this side of the screen! Even with no outward symptoms, no bumm rash, no thrush, no vaginal yeast, odor, stomach complaints, none of that-it's still worth a stool test. I also think my girls are over-methylators and they can have high tolerance for pain/discomfort, so maybe that contributes. She is not currently taking any steroids, just the Diflucan, some supplements, Zith and tons of probiotics, but I have no idea if it is enough probiotics. How do you know if it's enough so the Yeast Beast does not return? Can you tell I was a class clown?

Fantastic Melinda! Yes, he ordered many labs upon our initial visit and we go back for a follow up Feb 6. My older girl came back positive for yeast in her stool, which many on this board have been telling me to check out for two years now- swallowing heaping spoonful of crow now!!! He did call in Diflucan for her. The first week was horrible, symptoms from way back reappeared. But this week she turned the corner and is now as good as she's been on steroids!!! So, crossing our fingers this is what has been holding her back from maintaining 100% when going off the prednisone. She had no outward signs of yeast ever, no vaginal yeast, no thrush, no irregular bowel action, just the brain/slow cognitive tempo kind of lingering symptoms that just made life for a 12 yo girl a little harder than it needed to be. But the YeastBeast was there. Might be worth checking into if you feel like there is something else outside of the autoimmune cycle undermining your child's full recovery.

This is OUTRAGEOUS!!!!!Over what???.......meningitis for an 11 yo? I had Dr B's letter regarding vaccines. Did you have that to show her? The Ped I just fired was only concerned when he could "catch dd12 up" on meningitis vaccine. I mean, really, if the primary role of a Ped is to administer vaccines "on schedule", who needs them and why do they even need to be doctors? There must be some kind of vaccine bonus they receive-MUST be!!!!!! We switched to a family doc who is also a DAN. The whole family switched to him, luckily in network.