T_Mom

this was posted on another thread but I thought it should be here too-- NIH is offering a full review of the LeRoy students, via Dr. Sue Swedo (!!!) and Dr. Hallett. here is a section of the article... http://www.wivb.com/dpp/news/genesee/doh-offers-leroy-victims-evaluations DOH offers LeRoy victims evaluations Updated: Wednesday, 01 Feb 2012, 4:46 PM EST Published : Wednesday, 01 Feb 2012, 4:42 PM EST ALBANY, N.Y. (RELEASE) - New York State Health Commissioner Nirav R. Shah, M.D, MPH today announced that the Department has secured an agreement with the National Institutes of Health (NIH) that the NIH will provide the Leroy High School students suffering from tic-like symptoms with a free, independent third-party evaluation of their cases. The evaluations will be performed under the auspices of Dr. Mark Hallett and Dr. Susan Swedo of the NIH Institute on Neurology in Bethesda, Maryland, at no cost for the specialized consultation or for travel and accommodation costs of the students and their families. The Department of Health is sending information on this opportunity to visit NIH to the parents and families of those affected by this illness and urges them to take advantage of this opportunity to be examined by these experts. Dr. Hallett is currently NIH’s Chief of the Medical Neurology Branch and Chief of its Human Motor Control Section. He is currently the Principal Investigator of a clinical study of the diagnosis and natural history of patients with neurological conditions. Dr. Swedo is currently Chief of the Pediatrics and Developmental Neuroscience Branch at the National Institute of Mental Health (NIMH). Dr. Swedo and her NIMH team were the first to identify a new subtype of childhood disorder thought to be related to streptococcal infections known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). Dr. Swedo's work has led to the development of several possible therapies for the condition.

YES!!! Thank you Dr. SWEDO! !! I hope that every LeRoy parent takes this offer -- it is like winning the lottery!!! -- only better. I would RUN at this opportunity and insist that Dr. Swedo be the primary doctor seeing your child--She will rule out PANS and any other infectious issue. If anyone has the resources to get to the bottom of this it is Sue Swedo. Go for it parents--please!

OK, I have searched all over the Dr. Drew website and I have watched about 10 clips on LeRoy but cannot find one where a Dad calls in -- anyone have a link to this? thanks--

This is wonderful news!!! Thank you for coming back to share it. She IS on full strength antibiotics now for the long haul -- right? Dr. L, and other PANDAS treating doctors (ie., Saving Sammy book) would DEFINITELY have her on it -- You have had such good response to the IVIG, and perhaps helped by the antibiotic she has recently been on...please keep her on it. You will know if it helps. It will be clear. Since your daughter has been so severely affected, (and mine was too--), I encourage you to contact Dr. L or another PANDAS savvy (and EXPERIENCED) doctor and get the best follow up to make every effort to never have this happen again.

Unfortunately, if these girls had been appropriately tested 3-4mo. ago (at onset) there would have been a better chance of finding a evidence of PANS (a positive culture or titers). But now, after 3-4 mo, titers may have already risen and fallen. The "crime scene" is old. I do wonder if these girls have other symptoms that aren't being mentioned in the media. (At one point, anti-depressants were mentioned). People just don't want to mention psychiatric symptoms on national TV. Dr. Conversion Disorder also mentioned pre-existing anxiety. I also wonder if this is a new strain of strep...something that triggers a morph between PANDAS and SC, and is more likely to affect older kids. I AGREE! I think the only way to see (at this point) is to do a trial of either a steroid burst and/or antibiotics to at least see if these might have an effect--

If it was my child -- and knowing what we know re: the slippery diagnosis of PANS, that is exactly what I would be asking for-- A TRIAL of 30 day abx and a Dr. K. style (www.webpediatrics.com) trial of prednisone to "test" to see if it is PANS inflammation based. (I would really like to know if any of the girls have had OCD symptoms too--or age regression, or urinary frequency--all PANS related potential symptoms and, of course, much harder to own in public than a physical issue.) All I keep thinking is that it was a neurologist, a specialist in tourettes actually, who first suggested a steroid burst for my d during her PANS worst episode -- antibiotics are so incredibly benign, worth a try.

My initial reaction is to say, "good luck with this and let us know when you figure it out!" --how many of us have felt this way! --just a few ideas, check the various lists of Dr.s that parents have noted as treating Ps issues (at top of this forum, on www.pandasnetwork.org, and other online sources-- then call first and even ask if the ped. has had experience treating Ps or is knowledgeable, this may be worth trying, and save you alot of time.

Another news clip (sorry if this is already posted), in this one the NIH team leader Dr. H. speaks.A bit disheartening as the ref. is to the conversion disorder STUDY. At the end of this news clip Dr Mechtler (who diagnosed conversion) speaks re: his concern, seems to be in reference to Dr T, but the sound cuts off right when Mechtler is sharing the concerns. http://www.wgrz.com/video/default.aspx?bctid=1414429574001

This news clip of Dr. Siegel is GREAT! He makes the point that it may be PANDAS and that this is not something you determine by just a throat culture!!! He goes on to say you need to check bloodwork for titers !!! (thank you!) -- AND notes (on National TV) that EVEN THEN it may not show up--the news anchor then notes strep can hide out in different areas of the BODY! Wow!!! Thank you Dr. Siegel for your splendid accuracy in reporting--

This video clip is SUCH an important expose on the situation--Every neurologist in the country needs to watch this. interesting that it was the NURSE that was the one to connect the dots. Whether or not this turns out to be a "track-able infection", I hope they did rule out ALL infectious possibilities before labeling the girls with the, "diagnosis of exclusion." (We won't really know until they TRY to see if there is a treatment effect from abx and/or steroids and/or IVIG, in my opinion.) Do we know if any of the girls have had lumbar punctures? this is despicable.

Oh, my heavens--Pow Pow, this looks like an amazing study--and I believe you are correct in that your child's symptoms fit this profile. If I remember correctly, wasn't the encephalitis lethargica outbreak a result of a particular virulent strain of something ?!

Incredible finds Kim -- Thank you -- Lori's tics (verbal and physical) are so much like my youngest daughter's -- really weird to watch her video chronicle of her sudden onset "tourettes" in Leroy. IVIG and antibiotics asap would be my conclusion.

wow-- that is exactly what I would do if I were in the parents' shoes. This should provide the most top-notch review one could hope for, to rule out just about everything -- including PANDAS. (they may even get to be seen by Dr. Swedo and the research team there.) Undoubtedly NIH would include infectious disease review and a lumbar puncture to investigate CNS involvement/infection. Have these girls had lumbar punctures? Has anyone tried antibiotics?

amen to that.

Anyone know if there is a link to the segment??? I missed it!

--back to the poor girls with sudden-onset ticcing in Leroy-- Is anyone else concerned that there may be risk of a face-saving 'cover-up', of sorts, if the girls DO respond to PANS treatments? I wish there was a 'team' of PANDAS doctors supporting each other as they review the situation together. Dr. T.'s video appearances are WONDERFUL!! Who is going from NIH?

coco--I took the "Z-pack" reference to be the INTERPRETATION of the journalist...or would it be a trans-literation? Anyway, I thought that Dr T probably said Azithromycin, but the journalist took that to be a "Z-pack"...as we all know, a 30 day trial of antibiotics is worth a try !

It is hard, really, really hard -- and to have had 6 weeks of "good" and then this... Let us know what Dr B says, and I hope you are able to get this current flair under control right away!

This is FANTASTIC!!! (I love that quote by Dr. T.) -- those treating PANS have seen enough that they tend to tell-it-like-it-is ! Thank you one and all! This is truly amazing! I now hope and pray they figure out what is going on, and are able to help these dear families--

Stephanie--I am so sorry. The good news: Your son had a good "treatment effect", and you have further options. Yes, many of us have gone through this, and the set-backs are horrid when they happen--for everyone, but let this only fuel your determination to get him "back" again. I would hold on to the VERY good-news that your son DID improve with antibiotics! Now go after it full-force would be my strong recommendation and asap. (I'd start by calling and begging for an earlier appt. w/ Dr B.) My daughters have both had long periods of no-symptoms, and then with exposure to others (particularly when around others who were strep positive!) they both had horrible flairs. We handled it with trying changes of antibiotics, steroid bursts, and finally had to go to the immuno-modulating therapies... My d who had symptoms that sound similar to your son's had IVIG which was an absolute life-changer and has held her so far (she continues on full abx as well.) Don't despair, you HAVE seen that he responds to the PANS treatment paradigm, you just may need to keep going. My best as you pursue the next step.

Kim--Great find! Here is the quote which you made reference to (in the above noted article) re: Chorea and "GIRLS ONLY" post-puberty!!! "...Other manifestations observed in rheumatic fever are seen less frequently and include subcutaneous nodules, Sydenham's chorea, and erythema marginatum (134). Sydenham's chorea is a neurological disorder causing involuntary movements, muscle weakness, and emotional disturbances. After puberty, chorea is seen only in females (507). Chorea can be the only major manifestation present in rheumatic fever, but in the presence of an elevated ASO or anti-DNase B titer, a diagnosis of rheumatic fever can be ascertained. Antibrain antibodies reactive with neurons of basal ganglia and other brain tissues have been reported in the sera of patients with Sydenham's chorea (82, 254). Experimental therapy by plasma exchange has been reported to be rapidly curative in patients with chorea (512). " SOMEBODY really needs to get that little quote to the Leroy parents that are having a difficult time swallowing the "conversion" disorder diagnosis!

Bat-Sheva I so agree with you on the terminology -- The reference to strep in the term dissuades doctors from making the diagnosis-- (we have all been there!) Like so many of our kids on this forum, who "flair" with tourettes-like tics and/or OCD, when exposed to strep, or illnesses, etc., our daughters did not "test" positive for strep...and initially, like many others, we mistakenly thought that meant that the "PANDAS" issue was not it--how WRONG we were! Thankfully we found a caring doctor willing to TRY a PANS treatment -- (steroids at the time, and antibiotics) and the tics and OCD subsided. These dear parents-- I wonder if anyone has asked the t.v. doctors just how long THEY think these tourettes-like symptoms would continue IF it was not a true ticcing disorder!?! I mean, just how long do they think a high school girl would wish to continue these behaviors--15 minutes, an hour? 3 months or LONGER???! GIVE ME A BREAK. Conversion is another term for: "I have no idea what this is--must be them!!"

OK, so why haven't I heard of this before??? hmmm. Below are a few links, which I personally have never seen, but indicate "research says" : The ABX D-Cycloserine Lessens OCD Symptoms Is anyone using this abx? thoughts??? video: http://www.king5.com/health/Antibiotic-shows-promise-in-treating-OCD-disorders-137327438.html http://www.steveseay.com/ocd-d-cycloserine-medication-treatment/ article: http://www.medscape.com/viewarticle/571476 from the article: D-Cycloserine Plus Behavioral Therapy Lessens OCD Symptoms Pauline Anderson March 14, 2008 – A short course of D-cycloserine (DCS) (Seromycin, Eli Lilly) added to behavioral therapy could improve outcomes for patients with obsessive-compulsive disorder (OCD), a new study suggests. The study, published in the March issue of the American Journal of Psychiatry, showed that patients receiving DCS had a 52% decrease in the Yale-Brown OCD scale after only 5 behavioral therapy sessions. "This is a really fast and clinically meaningful response," said Sabine Wilhelm, PhD, associate professor at Harvard Medical School and director of the OCD and related disorders program and the cognitive-behavioral therapy program at Massachusetts General Hospital, in Boston. The study "shows that DCS speeds up the therapeutic effect inherent in behavior therapy and that patients can reach subclinical OCD levels after only very few sessions." "Fast and Clinically Meaningful" Unlike agents that target serotonin receptors, DCS interferes with the subtype of glutamate receptor called N-methyl-D-aspartic acid (NMDA). Originally approved by the Food and Drug Administration for the treatment of tuberculosis, DCS has been tested as a treatment for neurocognitive deficits in schizophrenia and Alzheimer’s disease. More recently, it has been used to augment exposure-based behavior therapy for several anxiety disorders. This current double-blind, placebo-controlled trial included 23 patients with OCD enrolled through Massachusetts General Hospital or the Institute of Living, in Hartford, Connecticut. The patients received either placebo or DCS in addition to behavioral therapy sessions. The groups did not differ in the proportion of patients currently receiving psychiatric medications or in their pretreatment Yale Brown OCD Scale or Beck Depression Inventory- 11 total scores.

Watching this clip reminds me of taking our d to a psychiatrist in our area, recommended by our pediatrician. He met with us at least every other day as she had such a sudden and severe onset of OCD issues, with ticcing, and subsequent age-regression, speaking issues, inability to write, etc. Finally, after one evening when we had to carry her into the office he told us he wanted us to go to Hopkins as he felt there MUST be a neurological basis for her illness! We were surprised, to say the least that he suggested that--He wanted us to see a doctor who at the time was out of town. We ended up seeing a local neurologist who treats children with tourettes, he watched her crawling around the lobby of his waiting room, and suggested a prednisone burst. Cleared her within days. It would seem the basal ganglia inflammation is an issue regardless of the "strep" or no strep issue. PANS