tpotter

I'll keep prayers and good thoughts going your way. I'm so glad for the positive update for you and dd.

Be careful. If your son actually has bipolar, it could get worse. Please watch for that. We were warned about that with my DS, and did not give him steroids until we were 99.9% certain it was not bipolar. Then, I went easy, and had an eagle eye out for it. Also, steroids can make lyme worse. I'm not telling you not to give it to him, but I am suggesting that you keep an eye on this.

The girl I saw on tv (with the really bad ones) looked like chorea to me...specifically SC. They sure looked like random, flinging motions and came from the distal muscles (i.e. the muscles groups closer to the trunk of the body, rather than from the hands. Tics would have been repetative movements of the same muscle group. Some of the other girls may have tics. Basically, what it comes down to is that DENT neurologists refuse to accept PANS as a viable diagnosis, so they saw no reason to ease the suffering of these girls by bothering to actually TEST for strep and other infections, and now that someone has done that (aka Dr. T.), they are trying to make him into a country bumpkin, (who actually does evidence based practice, incidentally,) and claim that when they get better, it will just be a placebo effect anyway! (see the news report by Dr. Mark Schwartz from Fox on another post.) It's truly sickening and unbelievable. Unfortunately, most people have no idea what to believe, and will believe the news reporters as the word of G-d!

I don't know if this is still the case, but she may still be needing money. It costs a lot to get a lab up and running, particularly when following governmental requirements. Just thought I'd mention that.

I am really, really confused. On the one hand, he says that Dr. T. is too reliant on blood tests (what does that even mean...is he supposed to practice evidence based practice without the evidence?), then he says that because Dr. T. has a well-worn office, it's a "placebo effect?" What is really confusing is that he says that there are too many doctors who are practicing without having actually examined the girls, but short of "talking to the girls", it doesn't appear that he examined them either? Instead, he makes statements such as it's "just mass hysteria", and bases it on his opinion from interviewing the girls (again, this doesn't appear to be "evidence based", but rather "opinion based". This is just too weird for words. So...doctors in big offices with all the bells and whistles don't have to bother doing any actual labwork, and can make their own opinion (doesn't appear evidence based to me), but doctors who have tired old offices, who actually do extensive testing, and treat based on the evidence based outcomes are just simply caring people who are helping get these kids better by the "placebo effect." WOW. Now, I've heard it all!

DS now 19 did not have his first MAJOR symptoms until 15 when he became suicidal (which I actually believe was OCD...he felt like he "had to" jump in front of the train, a car, out the window, etc.). We only figured it out, because DS now 16 was more classic, and we found a PANDAS specialist who was able to tie the 2 together. DS 16 had classic sudden onset, but STILL has strep + a bunch of tick borne diseases and serious exposure to other things, too. DS 19 could not be classified as sudden onset, probably because we didn't know what was happening then. But, he constantly had strep, had neuropsych symptoms, including every one you mentioned the other day, and a few years ago, we found a writing log of his from first grade showing that PANS had to have started at least in 1st grade. He also had a huge allergic reaction to the MMR vaccine (hives all over his body), so it may have started then or could have even been earlier. In other words, although he can't be classified as "sudden" onset, I suspect he was having multiple symptoms over the years, and we just didn't know until he had his huge one. I would definitely test for PANS (that's many infections, not just strep), and honestly, the PANDAS specialists are the best to do that with, because they have been collaborating and figuring a lot of this out together along with the help of parents. They know what to look for.

Agree with EAMom and LLM. I would also check for Mycoplasma pneumonia (which can be a co-infection of lyme, but also can stand alone.) Turns out I had/have it (still fighting it after 1 1/2 years), and gave it to my children. MycoP and Lyme (particularly bartonella) cause neuropsych symptoms, and mycoP can cause rages, which both my DS's had plenty of.) I have a list of tests that different people on the forums (PANDAS/PITAND and Lyme) have contributed to. These are tests that their children received. It is quite extensive, but checks the immune system, diffferent infections (bacterial and viral), lyme, etc. etc. They are tests that the different PANDAS/PITAND and Lyme specialists have ordered. If you want it, just PM me.

Very interesting...I actually think it's quite good. And, did anyone notice...Swedo says: (Dr. Swedo says) "Please note: PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) criteria use a less restrictive term of “pediatric onset,” which is variously defined as before age 18 years or age 21 years. Some additional information that may be of interest: (I apologize that it’s not already on the website. We’re hoping to get it up by the end of the week.)" (I bolded the last part.) Does this mean that the website may be changed by the end of this week?

CHOP does it all the time in the Philadelphia area. Last April (3 years after dx of PANDAS, plus IVIG and PEX tx, and 5 years after first getting sick), a local CHOP neurologist, who saw DS for Parkinson's-like tremors, told is it was "conversion disorder!" This was after HE had suggested PANDAS (during the examination), me saying: "yes, he's been diagnosed with it", and then voila...it's "conversion disorder!" Even more interesting, DS is a boy.

What blows my mind even more is that they only take part of what Dr. T. says: about the "medicine in their medicine cabinets" helping them, and doesn't put on the part where he said that so many of them tested positive for strep and mycoP. Once again...take part of the story, not all of it. Personally, I think the girls and their families should back off of dealing with the media, do what they feel in their hearts to be correct...get them better, let everything die down, and then, later, let Dr. T. and the families catch DENT off guard, and get the truth out...with a lot more information rather than dribbling out.

I am so sorry for everything you have been through, but I am very happy for you that you found us (like we all found each other.) First off, I have 2 DS's with PANDAS...both present differently. One is now 19, and the other is now 16. My 16 yo was sudden onset, but still took 4 years to find a dr who would dx it. My 19 yo sounds just like your son (we figured it out when he was 15 only because his brother was just diagnosed, and we found the PANDAS drs. My 19 yo looked like he had bipolar disorder. He is diagnosed with Asperger's, has anxiety, tics, OCD, has been diagnosed previously with ADHD, insomnia (particularly when he's getting sick again), undifferentiated connective tissue disorder (they ruled out Marfan's), severe fatigue, and so many more. Hopefully, when you find the right doctor, your son will get treated properly, and many of the symptoms may go away (or at least be under control.) The fact that you are just now finding it, though, I have to tell you that you may be just trying to control it all his life (it's an autoimmune disorder), but it can be controlled, and that's the exciting part. My son's social skills jumped from approximately 7 years old to approximately 14 years old OVERNIGHT after IVIG treatment. Suicidal ideations (which is what triggered us to figure out it was PANDAS) went away within hours of taking the right antibiotic...3 seperate times. So, there is hope, and great deal of it! The doctor yours was probably referring to is Dr. L, who is a Pediatric Neurologist. She is in Bethesda, MD (just outside DC), there is also an immunologist in Darien, Ct. (Dr. B.), and Dr. K. is a pediatrician in Chicago, IL, who has been treating PANDAS longer than all others. They, and several others are excellent. Check the beginning of the PANDAS board for a list of doctors, and/or PM me, and I'll send you information. What we now know is that PANDAS is not only caused by strep...it can be caused by just about any infection, where the blood brain barrier was penetrated, and the antibodies attacks the basal ganglia. MATH AND HANDWRITING problems are a very specific problem, as are all the other symptoms you described. Many of us are now finding that our children do not only have one infection, especially those of us who's children have been sick a long time. Mine for instance, have been affected by strep, mycoplasma pneumonia (turns out I was/am the carrier for this one), multiple viruses, Lyme, Bartonella, Erlichiosis, and possibly Babesia (the latter 3 are tick borne diseases, and the latter 4 all cause similar symptoms.) I don't want to scare you, but rather offer you hope that things can and do change with treatment. There is traditional medicine, homeopathy, alternative medicine and so many other things that many of us have figured out help and we all share it. with each other. And, just to give you more hope, my 19 year old is now in college, majoring in engineering. He is not cured, but certainly is under control.

But, didn't you know that if they get better with abx, it's the "placebo effect?" Aargh! Those horrible doctors are setting every scenario for the disagreement to continue, rather than truly trying to help these girls get better. Disgusting!

Great piece. BTW, is Dr. L. now doing IVIG in her office? Also, they got it slightly wrong by saying that IVIG cleans out the blood. But, minor issue.

I TOTALLY get it. That's why I'm trying to figure this out. Our holistic chiropractor did muscle testing, and found they needed it, but I didn't know at least one of them has MTHFR. Maybe he just picked up on it, and took care of it? But, for those of you who do know (maybe llm?) how do you know if your getting enough?

Did you read where they said that PANDAS is now due to "vaccine injury?" This is just unbelievable. But, yeah for Dr. Swedo doing on record as basically saying that Dr. Conversion Disorder is a rotten stinking lier! He doesn't care about anyone but himself, and I think he's finally being outed!

OK...now it's getting more interesting. Both my DS's take a product called: Methyl Protect from Xymogen. It has 1000 mcg of folate & 1000 mcg of methylcabolomin (I just looked at the ingredients) + it has B6 and B2 in it. Yet, we are sick all the time.

Thank you everyone. It's the 677T gene that is mutated in my DS, and I guess now the rest of us should get tested (DH has serious heart disease in his family, and he even had a mitral valve replacement last year.) DS16 and I both take methylcobalamin, and I guess I should give it to DS19? If so, how much? The sublingual pills I have are 1000 mg. I take 2 per day. LLMD wanted me to do shots, because my B12 levels were extremely low, but I had an allergic reaction to the shots (probably the protein that they "laced" it with ) So, I've been taking 2000 mg per day, but have no idea if it's even helping. Then again, DS16 and I do still keep getting sick. We've been detoxing (every day when I can remember in time), but we are still by far the sickest.

Quest. They found one of the 2 positive. Since it's genetic, and I know it affects methylation, and the heart (and he does have a genetic heart condition, and there's hx of heart disease on both sides,) I want to know what next.

This was the first time I have seen Dr. Drew, and I have to say, that I was terribly disappointed by his piece. None of the lead-ins mentioned that Dr. T. had found strep and mycoP. I even said to DH that it looked like we had gotten it wrong...that Dr. T. was not going to be on. Dr. Drew focused on the environmental piece (which is very possible that it is part of the cause,) definitely shut up the parents and the individual mom, and doesn't seem to get the fact that there's no collaboration, because DENT/aka Metchler has already professed that he's the greatest, knows what's wrong with these kids..."just by looking at them, because I'm a good neurologist," leaving nothing to collaborate about! Very, very disappointing! If only the parents would just wake up...start their kids on abx, and see what happens (I think the press at this point is dragging these parents now through the mud.) Parents of LeRoy kids...IF ANY OF YOU ARE READING THIS...START YOUR KIDS ON ABX, GET THE CONSULT FROM NIMH, GET YOURSELF HOOKED UP WITH ONE OF THE PANDAS SPECIALISTS, AND JOIN WITH US AND THE OTHER PARENTS OF THE OTHER PANS GROUPS AROUND TO FIGURE THIS WHOLE THING OUT!

One of my kids just came back for that. Now, please remind me, what do we do about it? Still waiting to find out if DS#2 is also Also, I just googled it, and it says that it is very rare, and that only about 200,000 people have it. If that's the case, why do multiple people on this forum have it? Could it be significant?

Looks like he might be on Dr. drew tonight.... http://drdrew.blogs.cnn.com/2012/02/06/exclusive-doctor-reveals-findings-in-le-roy-medical-mystery/ 04:08 PM ET Share Comments (Add comment) Permalink EXCLUSIVE: Doctor reveals findings in Le Roy 'Medical Mystery' We've just received big breaking news about the people in Le Roy, NY affected by tics and twitches. A doctor who has tested the girls says early results for six out of nine teens show something in common. He’s informing the families of what he’s learned right now. It’s not conversion disorder or the environment. So what is it? We can only reveal the exclusive details tonight at 9 p.m. ET/6 p.m. PT on HLN. Please join us for this huge development coming out of Le Roy. I just heard the same thing.

He's been getting lyme treatment for the past 1 1/2 years. Overall, he's better (as I had mentioned previously,) and I do attribute it to Lyme tx, HD IVIG (there were very clear and immediate benefits observed after IVIG), and supplements. But, we do still see a lot of up and downs. Right now, he's on his way to the ER (with DH), because he fell on the stairs and school and hear a "loud crack" in his leg. He was having increased chorea before that, and although he denies that it was from sudden weakness and/or coordination, I have my suspicions, because he's also been having mood swings and memory loss the past few days. Ugh!

Okay...I just tried to get to the article (to show dh). Here's the supposed link: http://thebatavian.com/howard-owens/mechtler-sensational-media-coverage-exacerbating-symptons-paitents/30309 It now says "page not found". and then I found it here ... where some changes were made? For example it now says: "Mechtler said he's been told that Dr. Swedo will appear on a syndicated television show either Monday or Tuesday and confirm her support of the conversion disorder diagnosis." Was the Dr. Drew show specifically mentioned in the original article?? I also agree that the wording "Mechtler has been told that Dr. Swedo will appear.." if so odd. Who told him that? The tooth fairy? I copied and pasted the article that I found, just in case the Batavian pulls it for good. I did not see the "Dr. Drew show" specifically mentioned when I read it. I saw what you have here, and was kind of wondering about where it mentioned Dr. Drew. I think we're just going to have to wait to see what happens next with Swedo and Dr. T. I wish the Batavian would stop quoting Mechtler already, and stop making this so much worse for everyone involved.

OK...I just read the article. Here's what it says: "The other thing the media hasn't known when reporting on the subject, Mechtler said, is that Dr. Susan Swedo, who first described PANDAS in 1998 consulted with Dent on the Le Roy 12 and concluded PANDAS wasn't the issue and has agreed with the conversion disorder diagnosis. Mechtler said he's been told that Dr. Swedo will appear on a syndicated televsion show either Monday or Tuesday and confirm her support of the conversion disorder diagnosis." Notice it says: "Metchler said he's been told that Swedo... and confirm her support of the conversion disorder diagnosis." That doesn't mean it's really happening (again, it sounds like he's just trying to cover his you know what. I also totally doubt she would have agreed with the conversion disorder statement, because there's no way he wouldn't have mentioned it previously. Personally, I think this is kind of like the cruise ship that capsized in Italy where the captain, after realizing he was in big trouble for abandoning his ship said: "I fell into the lifeboat!" (I had to think of that, because we went on a cruise the following week, and trust me, it was the butt of all comments when we were doing the safety drill!) For those of you who haven't cruised, the lifeboats are kept at the deck above the one that everyone goes to to board it. There is no deck leading up to the lifeboats (there were outside cabins with windows that don't open in front of the lifeboats.) In an emergency, the lifeboats have to be lowered to let people on. Additionally, there are covers on the lifeboats. In other words, it is physically impossible to fall into a lifeboat.

Personally, I'm going to wait and see what Swedo REALLY says. It's extremely hard for me to believe that she actually agrees with him about the conversion disorder, going against everything she has ever said in the past about PANS. Also, think about it...maybe he did talk with Swedo (and that's what he calls a consult). That doesn't mean she agreed with him. He may be trying to CHA, and may be slightly delusional to boot. If she had really consulted with him, and really agreed with him, don't you think it would have come out sooner? So, I'm really not going to believe a word he's saying. I say, let's just wait for the Dr. Drew show.