LeRoyMom

Ok, I decided to read some older forums that had postings on the whole LeRoy Cluster. Mechtler and McVige: Live Chat Tomorrow 5:30 pm EST Virtual date, anyone? This was one that caught my attention and I really wanted to bring up some things that I read in there. 1. Why did the girls decide not to go to Swedo? Well we received a packet from MedFit about a CD study and an opportunity to be looked at by Swedo. I can say from our stand point. Our movement and tic disorder neuro diagnosed our daughter with Tourette's not CD and I certainly did not want to be involved in a CD study. I am sure that the families that dealt with DENT and do not believe in their dx didn't want to be involved in a CD study either. 2. This Mechtler could not speak the truth if he tried. He continuely said he had seen all of the girls. We never went to DENT EVER. We never met him and he never saw our daughter. In our eyes at the time we were seeing an amazing neuro at Strong and she specialized in tic disorders as opposed to headaches and concussions. I don't know who the ###### he diagnosed with tic disorders!!!! Three girls were ALREADY previously diagnosed with tic disorders not by HIM!!!! He has been such a moron that I cannot understand how anyone could believe ANYTHING that comes out of his mouth. There was the whole thing about the girls came down with the tics due to the stress of the 9/11 threat levels......REALLY?!?! My daughter didn't have a clue about threat levels....lol. Then it was social media causing them. Also the bullying being caused by the kids that saw Dr. T.....ARE YOU SERIOUS?!?!?! 3. The damn dreaded "Placebo Effect"...LOL!!! Did anyone notice the large number of prescription meds in the pic of the NY Times article? Why haven't those had a placebo effect? Many of the girls were given a large number of serious meds that they were told would "fix" them and guess what....they DIDN'T! So if antibiotics, steriods, and anti-inflammitory meds are working I wouldn't say they were having a placebo effect.....I would say they were actually the reason the girls were getting better because they were solving the medical problem. Oh and at last Dr. T.'s newest release: LEROY GIRLS MARKEDLY IMPROVED WITH TREATMENT I again visited Leroy on 3/11/12 and re-examined some of the girls with "The Leroy Syndrome" I had previously seen on 1/29/12. Of the nine girls I had initially seen, six were treated with a combination of ibuprofen then antibiotics. All six were markedly improved within several days of initiation of treatment, and four of the six remained fully improved. Two girls improved fully, but then had a mild-moderate exacerbation of symptoms following a URI-like illness - again with very rapid improvement with ibuprofen. Two other girls were not treated, and have not improved. Another girl, also untreated, were lost to follow-up. Three new cases of Leroy syndrome, all from the Leroy NY were seen on 3/11/12, making a total of 16 girls evaluated thus far In the interim between visits, I have seen four other girls, two from NY state, one from New Jersey and one from Pennsylvania. Three of these girl's symptoms began well before the Leroy story became newsworthy. All had identical medical history to the Leroy cluster. All of these girls have evidence of either streptococcal or mycoplasma infection, and have also had a dramatic response to treatment. Based on the scientific observations above, one can conclude 1. The Leroy Syndrome is a very well-defined, infection-associated, anti-inflammatory-responsive disorder, and in this sense is a PANDAS-like illness, with symptoms that overlap with PANDAS while not identical to it. 2. The Leroy Syndrome is not unique to Leroy, much as "Lyme Disease" is not unique to Old Lyme, CT. 3. The Leroy Syndrome, while possibly modulated by psychogenic factors (as is true of most illnesses), is primarily a medical illness and medically treatable. On the same day I re-visited Leroy, a New York Times magazine article appeared authored by Susan Dominus. Mrs. Dominus, who is neither a physician nor a psychologist, elected to formulate her own theory on what happened at Leroy. This theory is based on conjecture regarding influences of stressful life events and an "absent father" on the children's behavior. Alternative explanations, including my PANDAS explanation, which Mrs. Dominus judges as "vaguely formulated" were very briefly mentioned. In fact, my theory of PANDAS (the "alternative fever response"/low histamine hypothesis") is very precisely formulated, and, while not yet formally published, is rather widely distributed on the internet. I categorically reject Mrs. Dominus' explanation and all similar models in which psychogenic factors play the major role. I stand by this position even more firmly than ever, and am in the process of gathering deeper molecular and genetic data to further investigate the syndrome. For example, we are sequencing mtDNA and the MitoNucleome in these patients. In summary, the Leroy Syndrome remains a mystery, but it is now clear that is a medical disorder. I challenge all supporters of "psychogenic theories" to provide competing objective data.

I do not really know this boy. So unfortunately I cannot help you with that one. My daughter had a movement disorder when the additional tics came on. We may consider getting another Lyme test done in the future. Can you request a certain lab? Our test was done at Quest. Unfortunately when we had our first tests done, the hospital lab did not know what most of them were or how to store the blood....uuuggghh!!! I did not watch that, but I will check into it. I have a dear friend that has been most helpful that also has Lyme. She knows just how difficult it is to find treatment and doctors. I don't like to speak for other people, I really don't know the girls that tested positive for what. I know our family history and hers would make her the poster child for Tourette's, but I think in addition to that, she had been dealing with numerous infections that may have caused a dominoe effect. Welcome LeRoyMom! I actually wonder how many of the affected Le Roy kids have Lyme. I know Dr. T. found that 2 were CDC positive...so I wonder how many would be positive by Igenex standards. (Did you watch Under Our Skin?") That said, I don't think Lyme is the only variable here...or we wouldn't have the issue of timing most of the girls starting symptoms with such a short time frame (Lori B. and maybe some others are exceptions, I know her symptoms started earlier). But, if they had underlying chronic Lyme (somehow making them more prone to a PANDAS-like autoimmunity), and they then got hit with a virulant strain of strep and/or mycoplasma (in the fall), then that might explain the unique presentation in a large group, with the timing (so many at once). If it was JUST lyme, even if all the girls got bitten by the same tick on the same day, I don't think they would have such similar symptoms starting all within such a short time frame. I also (IMHO) believe that ALL the LeROy teens tested by Dr. T. had strep...even though only 5/8 were positive. This would be consistent with the 37% of kids that don't get a rise in titers (either ASO or anti-dnase despite positive throat cultures. (see this thread http://www.latitudes.org/forums/index.php?showtopic=16476&st=0&p=132365&fromsearch=1entry132365 ) Also, LeRoyMOM...would you happen to know if the affected BOY teen, if he is older? Had he hit puberty yet?

Ok after reading my post, I see what I thought I typed wasn't what I really typed. I am plagued by tendonitis in the hand right now and my mind is working faster than I can type....lol. I was agreeing with you about a poor job of pointing out the only girls who are having stressors and then leaving the rest out because it doesn't back their claim. Interesting enough the media loves to keep pointing that it all started in October, but there was a boy who has since moved that started last year with the same symptoms and a girls that started in summer. A couple others started in September. The girls that have gone through that school with movement disorders is a bit high compared to the boys. I can think of at least 3 girls with Tourette's and only one boy. Those are the ones I know of, but there could be more. I know the media has really focused on a few of the girls, but there are differences amoung them. It isn't as though they all present in the same way. It. has been crazy the number of people comping out all over the country having children with similar symptoms. Although I will say I think it is some sort of varient of PANDAS, there are a lot of similarities. It may be that since no one has really seen a whole lot of PANDAS in teenage girls, maybe it presents a little differently. I have been reading about PANDAS in adults and how that presents differently. Maybe there in also the idea that it is influenced by both infection and environment. We do live in a predominate farming community. Just recently a farm pretty close to us was charged with spraying illegal pesticides on their crops. There are a large number of younger women in the community that have movement dieseases such as MS and Parkinson's. We do have quite a bit of cancer clusters too. Most families affected have chosen to stay out of the media. We have stayed out because our daughter made it clear that she did not want to be a part of that. However, if we didn't have those that went to the media, then we wouldn't have had Dr. T. It is great that he is open minded and trying to help. It may be that it is a combination of those affected with infections and those that may not. We will just never know. Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced Conversion Disorder. After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. ) Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times. And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud. Sorry you got dooped Corinthdad. First of all, I am so glad we are starting to hear on the forum from parents in New York. I think I could speak for most saying we have been screaming at our computer screens, praying for your children, and wishing that there was something we could do. Thank you for coming on and sharing the facts of the case. Many, like our family, have been at this a very long time. Years. My point about the statistics of families dealing with difficult situations may have been misunderstood--the point was--The Times had a slant they wanted to make, they found some girls and their stressful situations to back up their point (or more than likely what they were paid to run down) and they present it as "see it must be so". My main point is: What about all the other cases. Why did you leave them out of your story? A rhetorical question. Most of our PANDAS/PANS?Lyme families are laden with INCREDIBLE stress when the symptoms are flaring. Stress is everywhere. The New York cases are important. Thank you for coming on board--unfortunately.

Corinthdad - I can tell you we feel your pain! We were lucky enough to not deal with the DENT group, oddly enough the two docs specialize in concussions and headaches, not movement disorders. That being said we saw a terrific movement disorder and tic specialist at Strong Hospital. Although they are not PANDAS friendly there (Dr. MINK) our neurologist stated she would test anything we wanted. After seeing 2 different specialists, our daughter was diagnosed with Tourette's as she has had multiple tics for about 4-5 years. Interesting though that they seem to have come into play after multiple strep UTI infections. Our daughter has been on medication for tics for 3 years now. This late August she complained about her throat and was just exhausted all the time. She had been tic free this past summer and was able to come off her meds, but decided to start them up in August again because they started up again. Then came that horrid day in September... My lovely daughter, an avid soccer player, racked up tics like crazy and were out of control. She has had mild OCD for some time, but then again so doesn't everyone in the family...lol! What also really caught our attention was her math grade....ugh! She went from being a 90's student in the advanced program to dropping to the 70's!! She has other symptoms that my daughter will not allow me to admit too. She had high strep titors, mycoplasma,low vitamin D, only 1 hit on the Lyme test (line 41), and another infection. I can honestly say that all her parents are actively involved in her life...no runaway dad and there have been no traumatic events. Interestingly enough I researched quite a bit about the pesticide theory too. My daughters tics have always been worse when she plays soccer and I too was made aware of the fact that most pesticides contain endocrine disruptors and influence females more than males. In fact when we arrived at the ER one night in soccer uniform, there first question to us was what are they spraying on the fields. I can also assure you that a many of the girls come from great homes and families here! I appologize for whomever stated that if you look at the number of girls the articles focused on that have a "torn" family life to the total you could probably grab a collective random group and come up with relatively same numbers of kids influenced with single parent homes or lack of parent involvment. The media has twisted about EVERYTHING they could, even the DOH report is not accurate! UGH!!!! I often get upset about the articles I read, but then have to realize that they are generally written by people that are so ignorant and I shouldn't waste my time on them. The whole think about there being no clusters really confused me as I read about one in Missiouri and emailed a parent from one in California. If anyone has had the pleasure to watch the videos put out by Ruby and her mom, they hit close to home for us. My daughter is very similar. If you haven't check them out! Hang in there! I am hoping that your daughter is doing well. Oh one more thing about this stupid placebo effect comment....my daughter has been on 3 very harse meds to try to help her and none of them worked even when she was told they would work. She started Motrin and was told it may help with the inflammation no gaurentee like the others, that was where we first saw some positive effects. She has been on two sets of antibiotics and steriods as in between she ended up with another throat infection and sinus issues and started gaining tics back. She has just started long-term antibiotics and we are seeing a reduction in the tics and some improvements in the math grade. They are not gone, but better, much better. I hope things are getting better for you too!