kos_mom

I give up on posting to FB, but the Free Elizabeth Wray opening caption (not usre of proper FB name for that) is really bothering me. I have some concrete suggestions for improvement that perhaps someone way more FB savvy than I could pass on to the site administrators if they agree with my two cents on the current FB presentation: Apparently, one is limited in the opening caption to a certain number of characters and someone is doing the best they can within that constraint. I don't think, however, it is doing the job in terms of conveying the gist for those new to the story. Here is my stab using no more characters than the current caption: "Suffering from PANDAS/PANS and lyme and taken from the custody of her parents, who refused to place her in a locked psych ward. Day 5 of her confinement at Boston’s Children Hospital. (See About on PANDAS/PANS.)" The idea would be to update the confinement day number daily. The Pandas/Pans description on the "About" page could use more as people unfamiliar with it are asking questions. Would be nice to have a very short description in the "About" page in addition to a web link. Don't know how limited the characters are on that page. Here's my stab at something pithy: "PANDAS/PANS is an autoimmune disorder triggered by strep and other infections that causes severe neuropsychiatric symptoms in children and adoescents." One could go with "pediatric" in front of autoimmune rather than the "in children and..." However, while pediatric does include adolescents, people's first thought is much younger children and Elizabeth from her picture is clearly more of an adolescent. Also, I am not sure the link is the best in terms of PR. I think a link to the IOCDF page would be stronger--it is more descriptive and complete and has the advantage of being associated with a respected international organization, as well as a stellar doctor at MGH. Here is that link: http://www.ocfoundation.org/PANDAS/ Again, just my two cents--wish I weren't such an FB novice--never went on it until this came along.

Tatoo Mom, It's been a long time, but when DS was tested in kindergarten, he scored 3% on the Peabody Picture Test. This is truly abysmal but when I called to get school provided language therapy, the woman who answered said, "I've seen worse," and pretty much said he wasn't bad enough to get services. We pursued private language therapy (insurance erred in covering it for a couple of years.) He got a new SLP when he started second grade. After she tested him, she said on the basis of his scores any SLP given just that information would conclude there was no way he could read. But he could, and the SLP said I should be down on my knees every night thanking God for Sister Teresa, his first grade teacher, for that. The real leap came at the end of third grade when he did a then very new compuer program called Fast Forward. He did it at the SLP's every day for six weeks with a group of other kids. Despite the Pandas (we had to pay for several headphones as he kept chewing through the wires) his scores soared. He continued language therapy and did Fast Forward 2 the following year. The progress was not as impressive--his Pandas was quite strong at the time and, very bad for language therapy, one of his worst symptoms was a strong aversion to scores and scores of words. But it did get him to a very acceptable level. Language therapy really worked for him, and Fast Forward was a smashing success. Erobics/Hearbuilder are less intense and much less expensive versions of Fast Forward. Ko's Mom

Tatoo Mom, I can find no medical references to "Fragile Child Syndrome." This does not appear to be a real diagnosis--maybe just a description this doctor likes to give to certain types of patients? It seems very odd that he would give this type of description and then say gentle parenting won't work. Hard to imagine harsh parenting would be the right approach for a fragile child! You are a veteran homeschooler--how could your child possibly do better in a crowded classroom than home with you? Yes--just chalk this up as another pointless doctor visit, apart from the good news on autism. Ko's Mom (PS I am pretty sure my DS, if tested at that age, would have shown a similar gap between language and spatial reasoning and he is not autistic. For language delay, you might think about looking into the Earobics or Hearbuilder computer programs. Also, even if you are homeschooling, you might be able to get SLP services from the state--in some states these services are available for pre-school kids. This would be very worthwhile pursuing; it can be difficult to get insurance coverage for language therapy.)

Someone has set up a Free Elizabeth Wray FB page--comments are being posted but it is still under construction with regard to information. http://www.facebook.com/BostonChildrensHospital?fref=ts#!/FreeElizabethWray

They are often called developmental optometrists.

Doctor must have trained at Boston Children's Hospital...

Just noticed Harvard Medical School has a Facebook page--doctors at BCH are part of their faculty (as is Dr. J). Perhaps HMS should be getting postings as well about their faculty. I still have no idea how to post on FB. If I could I might say something like:"Your faculty at Boston Children's are practicing willful ignorance with regard to PANDAS/PANS and have wrongfully removed a young sufferer of this devasting disease, Elizabeth Wray, from the custody of her parents. It is time for all of your faculty to follow the lead of your own Dr. MJ and practice evidence-based medicine for this disorder." Marcel has done up a great poster that he put on the FB BCH page.

Sigh. When I explained this to my DS when he was ten many years ago (when far less was known) along the lines rowingmom suggested I added that doctors thought there was an excellent chance he would outgrow it by the time he was 17 or 18. His response: "That means I will never have enoyed being a kid." Avoid my mistake--also it proved not to be true.

Good thought. How about PANDAS/PANS? I think PANDAS may be more well known. Also, it would be interesting to know if Elizabeth's current condition was set up by a prior strep infection--since Beth used the term PANDAS I suspected that was the case.

Please consider that this is NOT conversion disorder. This is what doctors tried to tell me about my own DD until her leg spasticity reached a point where she became hyper-reflexive. After nearly a year of dismissiveness, we finally stopped hearing about somataform disorder when that point was reached. DD, 19, is now on baclofen , a drug coonly used for MS patients with spasticity, that allows her some ability to walk. She also takes tramadol for pain--helps somewhat. Her neurologist, Dr. L, is testing for many things for DD's leg problems, but her leading theory is that it is Pandas related--leg and knee pain commonly occur with the related disorders of RF and Sydenhams and, while perhaps not typical of Pandas, they can accompany it in rare instances. DD is on abx, but we are moving as fast as we can through the insurance quagmire to get her IVIG, which Dr. L thinks she needs as soon as possible.

I am assuming that she is in the hands of CPS and they are doing the hospital's bidding so she is in a locked psych ward, not with a foster family. I just noticed that EA posted the email address of BCH's public affairs office. Here is the email I am sending them: "I am sure you are aware of the controversy Boston's Children's Hospital has set off in the PANDAS family community owing to its treatment of Elizabeth Wray. Our community may not be large--PANDAS after all is a rare disease (a term not interchangeable with a nonexistent disease, which appears to be the view of many medical personnel at BCH)--but it is very supportive and passionate. Our passion is borne of the havoc this devastating disease has wreaked upon our families as we watch our children be robbed of their childhoods because so often doctors refuse to take even the simplest steps to treat them. The story sadly is monotonously the same for almost every family struck by this disease. What the vast majority of us have not had to deal with, however, is having a hospital tear our children away from us because we, after enormous research efforts we have had to conduct almost entirely on our own, are pursuing evidence-based treatment for them that willfully ignorant doctors refuse to provide. After everything we have been through, we cannot imagine further having to deal on top of that with the kind of nightmare your hospital has visited upon Elizabeth Wray's family. It is time for your hospital to revise your sadly out of date notions on PANDAS. It is time for your hospital to admit it erred in referring Elizabeth's Wray's family to Child Protective Services. It is time for your hospital to apologize not just to her family, but to all the family's who have come to you with PANDAS children whom you refused to treat because you do not "believe" in PANDAS despite copious NIMH studies. It is time for your hospital to issue a statement acknowledging the truly devastating nature of this disease and your immediate plans to work to alleviate the suffering of its young victims using long established antibiotic regimes supplemented by IVIG where needed and to battle the ignorance surrounding this disease. If you cannot do any of these things, it is time for your hospital to amend its motto, "Until every child is well" to add, "unless the child has PANDAS, which we don't believe in and refuse to treat.". Please work to make this situation right. Please free Elizabeth Wray." Ko's Mom

Nancy, Here's my email to her: "I would like to make known to you the consternation of PANDAS families everywhere, including my own, over the treatment Elizabeth Wray has received at Boston's Children's Hospital. PANDAS is a devastating illness that wreaks havoc on families and robs children of their childhoods if not treated appropriately. The standard of care as developed by the NIMH is well known to be antibiotics given over a much longer time than is conventional for nonPANDAS strep patients. It is most regrettable that the parents of this child were told repeatedly by medical personnel at BCH that PANDAS does not exist and that Elizabeth had her antibiotic therapy withdrawn. It is staggering that BCH has turned over Elizabeth to Child Protective Services because her parents were pursuing evidence-based treatment for Elizabeth's PANDAS while seeking help for her eating issues at BCH. In your role in medical communications for BCH I hope you will do all that you can to make this situation right and to educate hospital personnel on this disorder so there will be no more Elizabeth Wray stories, at least at BCH." Here's my email to the talk radio station: "I would like to alert you to a brewing controversy at Boston Children's Hospital that I believe will be of interest to your listeners. The parents of Elizabeth Wray brought her to Children's to seek help for eating issues their daughter was having in connection with a rare autoimmune disorder known as PANDAS--Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. This disorder has been extensively studied by the National Institute of Mental Health and the standard treatment protocol is long-term antibiotics, plus other medical treatments where this treatment is insufficient. Children suffering from this disorder develop sudden onset OCD and/or tics following a strep infection (and sometimes from other infections) that can be very debilitating. he condition is often accompanied by emotional lability, anorexia (often brought by fear of choking or vomiting), separation anxiety, bedwetting, hallucinations etc. Given he sudden overnight change experienced by these children, who can become very incapacitated, families are often plunged into chaos and disarray. At BCH, the parents were told repeatedly that PANDAS does not exist despite her diagnosis by two specialist neurologists, Elizabeth was taken off her antibiotics, and the hospital threatened to turn the child over to Child Protective Services unless the parents agreed to put their child in a locked psychiatric facility. Their lawyer, Beth Maloney, went to court yesterday to fight the hospital, but Elizabeth was nonetheless put under the care of CPS. Given how critical antibiotics are to the treatment of PANDAS children and the overwhelming separation anxiety many suffer, this was perhaps the worst possible outcome for the child. Here are links to the Facebook pages of Beth Maloney and Boston Children's Hospital where many have posted on this matter: http://www.facebook.com/pages/Saving-Sammy-Curing-the-Boy-Who-Caught-OCD/104887432702?fref=ts http://www.facebook.com/BostonChildrensHospital?fref=ts Some basic authoritative information on PANDAS is available on the International OCD Foundation website: http://www.ocfoundation.org/pandas/ This article is co-authored by Dr. Michael Jenike of Massachusetts General Hospital. I do hope you consider including this story in one of your shows: like many families with PANDAS children such as my own, the Wray family has been twice victimized, first by this devastating illness and second by mistreatment of medical personnel who are willfully ignorant of this condition." For good measure, I also followed your lead in emailing the two TV stations. I'd post on Facebook too, but I've never done that before. Ko's Mom

Wombat140, Congratulations on finally finding a doctor who gets it. I hope all your bloodwork gets underway soon so you can get on with the treatment as soon as possible. Until your recent posts, I did not realize you are as young as you are. You are, in fact, the same age as my DS. He had Pandas for many years as a child and dx'ed by the NIMH. His syptoms went away around age 14 and we put all the chaos behind as a distant memory. But strep came back and struck him twice while in college. For the first time in June he saw a proper Pandas expert. She put him on strong abx that he daid helped, had him have his tonsils out, which helped even more, but he is still not 100% and is being scheduled for IVIG. He is not in college this year owing to the Pandas, but we are hopeful we will be able to return in January. I also have a daughter, 19, who was just diagnosed last month. She has gotten much better in some ways with abx, but her Pandas doctor believes she still remains very sick and needs IVIG as soon as possible. Although most on this board are dealing with much younger children, you definitely are not alone in seeeking help for this as a post-adolescent. We are hopeful we can overcome the destruction in our children's health this illness has brought and you now have good reason to be hopeful too not that you have found proper medical care. Ko's Mom

Kleek3, So glad that the visit with Dr. T worked out so well. It is always worth getting a second opinion--though like your DH, this would not be the natural impulse of my DH either. With regard to frequent urination, my 22 year old DS saw Dr. L in June and she asked him this too. To my surprise he said yes. So there is no age limit on this one! I keep flashing back to the first grade teacher of my DD, now 19, who told me I should get her checked for a UTI because she was going to the bathroom so frequently. She said it in a kind of deprecasting way, so I ignored it. Maybe things would be different had I paid more attention back then.... Ko's Mom

Mama2alex--thanks for the message. Will email.

Here is a link to the contact pages of a talk rado station in Boston. I located another one, but it had no contact information I could find. http://www.newstalk969.com/contactus.aspx Also, on the Saving Sammy webite, a poster mentioned this contact at Children's: RE: The Wray Family...Dr Claire McCarthy is a primary care physician and the Medical Communications Editor at Boston Children’s Hospital. She has been named one of the Top Ten Online Influencers because of her very visible blogs on children's health. I have written to her in the past hoping that she would spread awareness of PANDAS. Her response was that she has never personally dealt with a PANDAS case. Perhaps she will get involved now. You can email her at claire.mccarthymd@childrens.harvard.edu, or follow her on Twitter @drClaire.

I spoke to an activist friend of mine. Without knowing much about the particulars of the case, here are his recommendations: 1) Set up a Free Elizabeth Wray Facebook page. This would link to 2). 2) Make a UTube video that clearly sets forth the case and galvinizes people to support the cause. He strongly suggested that the producer be in his or her twenties or younger. It seems people over thirty do not have much of a knack for making successful UTube videos. My addition: the video should probably feature Beth and/or Elizabeth's parents. If they're not available maybe someone's older kid who knows how to do these things could make the case? Absolutely no experience here with this medium--I've barely watched one. 3) The reporter contact is good, as is the sending of emails to TV stations. 4) He also strongly advised getting Boston talk radio stations alerted--they are powerful in thier market and are always looking for good material. I'll try to look these up and will post so people can email. 5) Hold demonstrations in front of BCH with Free Elizabeth Wray as the basic theme with additional creative placards. This is what he thought of off the top of his head. I'm sending him links about this and he'll ponder further.

EAMon, The reporters will want to focus on BCH for the local hook. And BCH rihtly should take a lot of heat for this. But should the story spread, a journalist might want to see if this is isolated to BCH or part of a broader pattern. If you or anyone learns a reporter is interested in the broader story, let us know--there are at least as many stories of mistreatment at medical hands as there are posters on this board! Ko's Mom

Same thing at JHU three years ago. We took our daughter, now 19, there because we thought there was a neurological component to her many bizarre issues that was perhaps related to her documented epilepsy. She had eptiliform discharges on a sleep deprived EEG run over an hour and a half. JHU pronounced themselves "unimpressed" with that EEG. On the basis of a 20 minute EEG they ran in the middle of the afternoon (completely inadequate for dx'ing epilepsy), they decided she did not have epilepsy and that her seizures and other issues were a result of conversion disorder. It now seems the issues she was having at the time were PANDAS-related. (DD has just recently been formally dx'ed by Dr. T and Dr. L) I recently gathered up all of DD's medical records to follow up on Dr. L's comment back in June when DS saw her that DD could also have PANDAS and saw the JHU records for the first time. They ignored a high sed rate, as well as a comment from my daughter that she was concerned she had the same thing as her brother (PANDAS) because of her various OCDish behaviors. I sure wish they had at least communicated that to me--I didn't even begin to think about PANDAS for her issues until this year because her presentation is so different from her brother's much more classic presentation and she didn't tell me about the OCD behaviors. Even a sixteen year old knows better than some of these doctors!

DD had spelling problems as well--though I think this was due more to whole language reading instruction. Luckily she did learn to read and is an avid reader. I worked with her for a while on spelling with AVKO, which is used by many homeschoolers. Her spelling did get better though she quit early. This is a low investment program from a time point of view, and it's cheap as well. Basically, you give a spelling test every day--the words are chosen based on pattern and the point is to imprint the patterns. The first lesson, for example, begins: in, skin, napkin, grin... Given the order the words are given in, the student has a high chance for getting the spelling right each time. I used the adult version ($13)--you are supposed to be able to get through it in a year and I wanted her to get through the basic word patterns on a supplemental basis but homeschoolers would probably go for the children's version as it would be a part of their curriculum. Here is the link: http://avko.org/ssadults.html

T. Mom, I also have federal health insurance and have pm'ed you. Ko's Mom

It sounds like BCH 's line of argument is that the parents have a child with an eating disorder whom they ae treating with abx rather than accepted treatment for anorexia and that constitutes some kind of child abuse. The last I looked, however, conventional treatments for eating orders have poor success rates--possibly because a good portion of them actually have untreated PANDAS/PANS. Dr K notes eating issues as being particularly indicative with adolescent onset PANDAS/PANS. The campaign to have pediatricians check for strep when children suddenly have tics, OCD, anxiety, should be clear that they should check for this in adolescents who suddenly develop eating issues. Would be very interested in how the court hearing today goes--if someone hears, could you post it?

mdmom, Am also in the DC area and have pm'ed you. Anyone else in the DC area we could brainstorm with? Getting IVIG for our kids at the end of the day will require people who know how to work the system, and these people are heavily concentrated in the DC area. Perhaps collectively we could use our contacts from among our neighbors, friends, and business associates in the area to figure the most effective way to organize an effort. ko's mom

Croatian Mum, Please let us know how your son is doing and how successful you are in getting some help through some of the doctors listed. You can always post here as you move forward--forum participants have a wealth of knowledg and experience. In particular, if you decide to contact the doctor in Italy, you might let people know how helpful she is--I imagine there are people from other areas of the world who are monitoring these boards for help with their kids who may not have the resources to consult in the US but could make it to Italy. Ko's Mom

airia195--was just amused with the mass conversion disorder dx ridiculously popping up once again in LeRoy and with the far-fetched (or perhaps not quite so far-fetched!) idea of a Mechtler or similar pinpointing a report on a conference as a source of a mass conversion disorder as a desparate justification for his dx! Didn't take it as a negative comment on the conference policy.