Tomorrow in Boston

Discussion in 'General Discussion' started by n3uromanc3r, Oct 10, 2012.

  1. and in defense of the post about the docs get faster internet-

    If it wasnt for the internet, many people would not have info on PANDAS and just take their docs word for it. Newsflash- There are many uninformed and BAD docs out there. Had I listened to my long term PEDI my child would be on psych meds and not the meds to treat the problem.
  2. one last note... the people on the FB page are angry parents with sick kids.
    they dont see the bigger picture. they are not behind the scenes. They are going to keep posting to that thread and some just want to argue.
  3. n3uromanc3r Member

    If you're referring to this thread, I posted the only dox easily available at the time. If you're talking about some other thread, I don't know what you're talking about but maybe I forgot and I'd be happy to have you refresh my memory. But either way, posting without dox = moonbat? I do not think that word means what you think it means. Please provide dox next time you wish to sully my reputation.
  4. There are different big gun lawyers getting involved now. The court appointed attorney is very young and only had the case for 1 hour prior to the hearing.
  5. Anonymous Member

    Could you tell me, is the damage done by the viral/bacterial assault to the basal ganglia? Recoverable, or are the psychiatric symptoms permanent in these patients?
  6. Doctors believe that once the body stops the attack on the basal ganglia, that whatever infection etc has been treated and is completely gone that there should be no permanent damage. If left untreated there could be permanent mental health issues

    So treat the infection(s) can be multiple

    Treat the immune system (IVIG)

    sometimes they just treat the infections and over time the autoimmune response stops. It takes a very long time.

    My child got antibiotics and then IVIG and got to 100%. but then got Lyme disease and other "fun" germs and set him off again. these children are extremely sensitive.

    I have seen some comments about people who dont vax their kids. I can tell you that these kids do not do well with vaccines as it produces an immune response which causes the whole process to worsen.

    This happened to my son. I was very pro vaccine but there are some legit issues surrounding them...But I guess I am getting off topic now..
  7. want to make it clear..the bacteria are not attacking the basal ganglia. Its the childs immune system. Instead of (or in addition to) attacking the germ, say strep- it goes into overdrive and for whatever reason attacks the basal ganglia. they think its a genetic problem that exists. I have 2 PANDAS kids and many families have multiple children with PANDAS/PANS
  8. One of the many issues PANDAS kids have is that they have eating issues.

    Some fear choking (my son had this)

    and some just dont eat. The appetite area of the brain is in or around the basal ganglia (I cant recall if its in or around)
    My son barely eats. I can not just shove the food into him he is way too thin.

    Some have full blown anorexia which is the issue with the child in question
  9. Anonymous Member

    I am pro vaccine, however in your sons and other pandas cases absolutlely agree that you have to adopt a different approach to vaccinations.

    If the medical profession accepts that syphillis is a cause of psychiatric illness, which they do, then they have to accept viral/bacterial infection in general as a potential cause. If as is suggested there is reluctance to accept this approach, until further research is done, can they not tackle the treatment from both perspectives concurrently. Not familiar with contraindications for the treatments you refer to in your sons case. But I am puzzled as to why they can't treat Elizabeth for her Psychiatric symptoms as well as any infections she may be carrying. A sort of catch all approach.
  10. First, I notice that the NIMH very out of date FAQs on Pandas have been posted here. I am not sure how old these are or why they are still up, but they could be nearly a decade out of date. The best and most recent information is provided in the link below in connection with NIMH's current recruitment efforts for a trial of certain Pandas treatments. Antibiotics are definitely recommended as treatment, and the report is fairly encouraging on the use of prophylactic antibiotics, as well as IVIG and PEX. That said, there is some politics in the Pandas world; NIMH has done a number of very good studies but two well-known Tourette's (not OCD) specialists have repeatedly nipped at the heels of the NIMH. As a result, some of their recommendations are much more reserved than the NIMH researchers would make if they had their druthers. Both of these specialists have ties to drug companies making Tourette's medications that they failed to disclose in an article they did in December--the Journal of Pediatrics had to run an erratum this year revealing the undisclosed conflict of interest. (This is a bit of a tangent, but the relevant docs are on the web and can be provded.)

    Second, I would like to clarify a few points about the Pandas community and psychiatry. I will speak in generalities as I couldn't possibly speak for each and every one in the community.

    The Pandas community is definitely not against psychiatry or even psychotropic drugs. What they are against is the use of psychiatric drugs and techniques like exposure response prevention (ERP) as the frontline treatment for Pandas. The underlying cause of their kids' myriad weird (probably not politically correct, but descriptive) neuropsychiatric symptoms and behaviors is an infection from strep or, in some cases, other infections like mycoplasma pneumonia. Many of the doctors who specialize in this think the initial autoimmune response set up is made by a strep infection, although the first outbreak of the symptoms may in some cases come when a child subsequently gets one of these other infections. (Definitely an area of further research.)

    Pandas parent want their kids tested for strep, and if negative, for these other infections, and have them treated promptly with antibiotics. The doctors at NIMH and other research hospitals that participate in trials with them have seen antibiotic therapy, and occasionally steroids, as well as IVIG--a bigger gun used for more recalcitrant cases--completely eliminate neuropsychiatric symptoms that did not respond to SSRIs or antipsychotic drugs, the front line treatment for conventional OCD and tics, two of the major symptoms that often accompany Pandas.

    In a number of cases, the antibiotics or IVIG, while greatly relieving symptoms do not eliminate them. Parents with these kids embrace having a broad arsenal of tools they can use to manage the residual symptoms. They do use SSRIs and anti-psychotics, as well as ERP, but they view these as very much supplemental to the frontline treatments like antibiotics. The frontline treatments are often much easier on the kids and often can deliver quick results so they can go back to living a normal childhood. There may be parents who have seen such relief solely from using psychiatric drugs, but I have never heard of one. ERP can be effective but without antibiotics it can take take several years of quite painful therapy to see results. It is a bit cruel to put a child through that when a course of azithromycin might have done the trick.

    Finally, many Pandas families use family counselling to address the stress of Pandas havoc in the household.

    Some families may supplement with alternative medicine type approaches, although I think most are quite committed to sticking solely to conventional medicine. Some might try gluten free diets, for example, in an attempt to temper the inflammatory response of their kids. The Pandas community takes a pretty big tent approach to whatever parents do as supplemental measures, but they are all pretty much agreed on antibiotics as the primary weapon of attack, bolstered by steroids and IVIG as needed.
  11. moarxenu Member

    As mentioned by PANDAS Mom most recent information is the NIMH Intramural Research Program :

  12. moarxenu Member

    From NIMH Instrmural Research Program continued:

  13. moarxenu Member

    btw welcome to WWP, bostonadvocate and Pandas Mom!
    • Like Like x 2
    • Agree Agree x 2
  14. Anonymous asked why Elizabeth cannot be treated simultaneously for her infections and psychiatric issues. I think the answer is she could be if the doctors were following the NIMH advice as posted by Moar and knew what they were doing. But first they would need to believe she had Pandas.

    As my earlier post explained, the conventional psychiatric tools should be used only as supplemental tools. The psych meds in this case woudl probably be SSRIs as she has OCD induced anorexia. As the NIMH statement on tretment says, these have to be started in much lower doses than one would normally do as Pandas kids tend to be very sensitive to these drugs. The increase in dosage likewise would have to be much slower than normal. If a doctor does not believe the child has Pandas (or does not believe in Pandas at all), the child could have a large exacerbation of symptoms when a conventional starting dose is given. Ativan, often given to calm people, is particularly notorious for often having opposite effects in Pandas kids who might be given this drug in the middle of a rage attack, which some are prone to.

    People are objecting to Elizabeth being given the anti-psychotic drugs because 1) BCH has taken her off her frontline antibiotics treatment and 2) since they don't believe in Pandas they are probably messing up the dosing and causing an exacerbation of her symptoms.

    Likewise, they are likely using some of the cognitive behavior therapy techniques on her anorexia. This is okay as a supplement but these techniques can be extremely stessful on a child in a Pandas flare, which no doubt Elizabeth is experiencing. Conventional wisdom in the Pandas community is that one does this supplement only when their current flare has died done and the child is more capable of doing the therapy. Doctors don't have patients who have just had back surgery immediately begin physical therapy. They allow them time to recurperate from the surgery and very gradually begin the therapy.
  15. Pandas mom I am really glad you joined the conversation as you can get your points across more eloquently than I!

    Another issue is that PANDAS kids almost always have seperation anxiety. To remove a PANDAS child from their safe person (parent etc) that is very traumatic. The parents can not visit I dont think anyone has been able to visit.

    my issue with the gag order-

    I believe that civil rights are being violated. They could have a gag order that keeps the lawyer and parents from speaking about court proceedings, but the family should still be able to talk about the situation. How do they contact a specialist if they cant discuss the situation?
  16. and what makes THIS case so special that they need a gag order? BCH was/is getting slammed but isnt that freedom of speech?

    too bad for them.ssrvendo
  17. Anonymous Member

    This is not really the best place to diagnose and treat Elizabeth, obviously.

    If Elizabeth's don't like her doctors, they should be able to find other doctors. There are tons of doctors in Boston and patients switch doctors all the time for a whole bunch of reasons.

    Apparently something happened that made people at the hospital worried about how the parents were dealing with this situation. I don't know how we can comment without hearing the hospital's concern here.

    Just speaking generally, for any hospital treating a sick child, if the child's parents seem to be escalating a fight, the doctors have to call protective services. If protective services can help mediate the conflict then they won't take the matter to court. But if there is no way to resolve the fight, the case worker will file for temporary custody so someone can give consent for treatment and or transfer to another set of doctors acceptable to the family.

    The DAN doctors have a very bad reputation. So if Elizabeth showed up with a history that doesn't fit the PANDAS criteria, as well as a host of other questionable diagnoses, you have to expect some skepticism.

    Forget about trying to transform psychiatry or whatever big political agenda you guys want. Set that aside and let this family have some space to hear the evidence for or against different treatment plans.
    • Like Like x 1
  18. Anonymous Member

    Well established science must be the guide when a child is suffering from psychosis and will not eat. These are life threatening problems.

    Let the academic arguments happen in conferences and other forums where physicians talk about the medical literature. Set all concern about cutting edge anything until this child is more stable.

    Don't stir up trouble at a major children's hospital where kids are sometimes dying. Just don't do that.
    • Like Like x 1
  19. Anonymous Member

    For anyone going to the protest, be sure to get your flu shot first because it's that time of year. We don't want to pass the flu on to people going into the hospital.
  20. Anonymous Member

    This is the best outcome from "Help me with my cause" thread, ever.
    • Like Like x 1
  21. Anonymous Member

    The psychiatrists cover a lot of the same ground as the neurologists. Both are board certified by the same organization, the American Board of Psychiatry and Neurology. So I do not think you are correct.

    Jim Leckman at Yale was talking about post streptococcal OCD in the early 90s, and doctors have known about Sydenham's chorea since the 1600s, so I do not think you are correct.

    Maybe you guys are getting too hung up on this diagnosis thing? It is possible to keep an open mind about the diagnosis while trying some interventions.

    For example, take a kid who won't eat and is confused. Maybe they aren't eating because they feel nauseated. Maybe they worry about their food being poisoned. Maybe they have an ulcer or cancer. Or maybe the eight months of various antibiotics have done some harm to her gut.

    Without knowing exactly what is causing the anorexia, you could try a medicine that relieves nausea or heartburn. Sometimes that helps. If it doesn't work you might try an antipsychotic. Sometimes when people are less psychotic their appetite picks up. If these ideas don't work, then you might do an endoscopy.

    So there you go, lots of stuff you can do even if you aren't sure of the diagnosis.
  22. Anonymous Member

    This lady's eyeballs have that Lancaster Dodd thing going on. I better hurry up and finish this post before she gives me the PANDAS in my head.
  23. Anonymous Member

  24. Anonymous Member


    The fact that this behavior is not obviously inappropriate to everyone concerned causes me great anxiety for the future of this country.

    There is a well coordinated war upon science in this country and it is working.
  25. Anonymous Member

    • Like Like x 1
  26. The problem with these academics isn't that they are being paid by pharmaceutical companies, in particular one developing a new drug for Tourette's, but that they failed to disclose it. This is standard in writing articles for scientific and medical journals; failure to disclose conflicts of interest in many fields signals a lack of integrity that greatly undermines their credibility.

    I share your reservations about doctors that are on the fringe and do hundreds of tests. Many, I would say the vast majority but could not be absolutely sure, Pandas parents also share those reservations and stick strictly to conventional doctors. I am one of those--my kids have been treated only by an uber-respectable pediatric practice and a doctor who was the chief of pediatric neurology at a large teaching hospital. One of my kids also was diagnosed at the NIH in connection with a trial recruitment (he was deemed too chronic to qualify).

    Sticking to conventional doctors with rock solid credentials is not just smart, but also perhaps the best way to protect one's children. If they show up in the ER with a huge exacerbation of symptoms and the doctors know and respect their treating physicians they are way more likely to get the most appropriate treatment for their condition.

    The infections that need to be tested for if the child does not test positive for strep (by far the biggest offender) are mycoplasma pneumonia, cox sackie virus, ebstein barr virus, and lyme's disease. This is a handful of tests--not hundreds. Lyme's can be controversial--the big PANDAS specialist doctors will do only the Western Blot and treat only if the child is CDC positive because they want to stick strictly to the bounds of conventional medicine and do not want Pandas to beome a whacky fad diagnosis. They understand that if they allow that to happen it would undermine their ability to treat children who in fact are very sick.

    The child, Elizabeth Wray was positive for mycoplasma pneumonia and CDC positive for Lyme. She also had rhematic fever as a child, a big red flag for Pandas because it also is caused by an autoimmune response for strep and Pandas often occurs in children where there is a family history of RF. With this clinical history, it is highly likely any of the very respectable Pandas specialists would have diagnosed and treated her for Pandas. I fear that her initial diagnosis was not done by one of these doctors (there are only a handful and parents often have to travel to see them) but rather by someone without absolutely bullet proof credentials. That allowed BCH to be dismissive of her diagnosis, particularly as they have no Pandas specialists on staff.

    Children should not be penalized, however, because their parents did not know that they needed to protect their child by getting them diagnosed by a doctor with the stellar credentials my children's doctor has. They were clearly doing the best they could and drove five hours to BCH to get better treatment for their child; if they had driven three blocks more and gone instead to Mass General, which is also a Harvard affiliate and has a Pandas specialist (a psychiatrist), they would not have lost custody of their child and she would be getting medical treatment not only for the life threatening aspects of her anorexia, but also for her Pandas.

    BCH is simply not providing the standard of care for this illness that other instituions like the NIH, Stanford, University of Michigan, Mass General, New York University, Georgetown and the University of Southern Florida are. Their failure to recognize this and adamance that they know so much better than Mass General, where her parents wanted to transfer her, to the point that they moved to take away parental custody pretty much defines medical hubris.
  27. Anonymous Member

    Gee, CCHR much?
  28. anonymous612 Member

    I'm still not sure what this has to do with Anonymous.

    EDIT: Besides, we don't want to jeopardize our paychecks from Big Pharma, do we...? ;)
    • Funny Funny x 1
  29. Anonymous Member

  30. Not knowing the details I can't comment. But sometimes the ethical breach isn't as bad as the anti-pharma crowd makes out. Sometimes a researcher gets a one time payment of a few hundred dollars for some talk and forgets to include that in the conflict statement. That oversight can be fixed and doesn't necessarily mean the researcher is a creep.

    Your conventional/fringe distinction will often fail you. There is a DAN doctor on the faculty at Harvard. In fact many pseudoscientists enjoy well funded positions at that venerable institution. They're also happily ensconced within my not so venerable local hospital within the department of "integrative medicine."

    Here is how you recognize the pseudoscientists from the more epistemically careful physicians: the pseudoscientists do exactly what you are doing now in front of Boston Children's Hospital.

    Hey thanks for terrifying the already terrified parents escorting their bald and wasting kids to the oncology unit.
  31. 072fdf9213069726eb51fb9427f5a413.png

    Nancy Belisle Tozier
    I'm wondering can a complaint be lodged with the state regarding the doctor(s) 'treating" Elizabeth? Also one directed personally to the social worker? Nothing hits home until it's personal. Also, could someone post their names here so our signage can call them out personally?
    Like · · Follow Post · October 8 at 4:50pm
  32. "Here is how you recognize the pseudoscientists from the more epistemically careful physicians: the pseudoscientists do exactly what you are doing now in front of Boston Children's Hospital."

    I'm not exactly sure what your point is here; there are no doctors protesting in front of BCH.

    None of the big Pandas specialists is an "integrative" doctor: they are neurologists, psychiatrists, or immunologists. The only supplement they recommend is probiotics for their patients on antibiotics; this is good medicine.

    I am not sure what your point of view is; I assume you don't think it's okay for a hospital to allow a doctor's first response to a family that wants a second opinion and transfer to an affiliate hospital is to move to take away parental custody. This does not strike me as an unreasonable action to protest, although it's perfectly understandable not all would be moved to join in.

    The ties the doctors in question have with the pharmaceutical companies are pretty long standing and go way beyond a one off $500 consult fee. Personally, I am not opposed to academics working with pharmaceutical companies to develop medications that could improve the quality of life for many. The existence of such opportunities allows some really brilliant people to stay in academics without having to make big financial sacrifices. But rigorous adherence to disclosure of conflicts of interest serves the greater good of ensuring open and honest academic debate that promotes good science rather than self interest.
    • Agree Agree x 1
  33. I meant more generally that the pseudocience people use political tactics rather than evidence to advance their ideas. An example of this might be the British Chiropractic Association which responded to criticism from Simon Singh by taking him to court. Or in your case, using black PR against the hospital to advance your views about PANDAS.

    Tell me the name of the doctor that diagnosed Elizabeth with PANDAS in February 2012 and I will then check to see if you are correct.
  34. Child protective services has custody precisely because the doctors recommended that CPS petition for it. So they really can't wash their hands of blame. The doctors could recommend to CPS that she be transferred to Mass General, which would release her from BCH and allow her to receive Pandas treatment. (CPS almost always goes along with whatever a hospital says.) This would also allow her to see her grandfather, whom BCH has banned from hospital premises, mostly likely because they got a gag order on the girl's parents and their lawyer buy not on him, leaving him free to make public statements on how the girl is faring if only he could see her.
  35. Anonymous Member

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  36. If doctors see a reason to be concerned about a child's parents they are legally mandated to report that concern to protective services. They usually want for things to work out so the parents remain involved because that nearly always is best for kids. But they can't do an investigation of the family themselves so they let protective services do that.

    The parents are probably nice people but could not agree with recommendations the doctors felt were necessary due to whatever, maybe because their heads have been filled with DAN woo and antipsychiatry terrors. Maybe some time and education will fix this; maybe not.

    I'm having a hard time why you guys want Elizabeth on antibiotics mostly, when she's already been on a bunch of antibiotics for months and has been getting worse. Also why are you against antipsychotics when they help psychosis in PANDAS?
  37. "Tell me the name of the doctor that diagnosed Elizabeth with PANDAS in February 2012 and I will then check to see if you are correct."

    I don't know the name of the doctor; I do know it is not one of the big name Pandas specialists. Pandas can be diagnosed without consulting one of these specialists (an informed family pediatrician could do it), but parents are well advised to do so for more complicated cases like Elizabeth's. Unfortunately, they did not.

    I do know that once they got to BCH and the hospital told them they did not believe in Pandas and wouldn't treat it, their lawyer got in touch with two psychiatrists at Mass General: Michael Jenike (who has made videos on Pandas in his role as head of the International OCD Foundation but who does not treat pediatric patients) and Dan Geller, a pediatric psychiatrist. With full knowledge of BCH, the family was in the process of arranging a second opinion with Dr. Geller, including the best place for her to be transferred (likely Mass General), when BCH went to child protective services and custody was removed.
    • Agree Agree x 1
  38. Anonymous Member

    Shaman have been successfully treating PANDAS for trillions of years.
  39. Did you witness this conversation yourself or are you relying upon someone else's account?

    Maybe the doctors said that, but I don't know why it would be necessary for them to say that. "I believe in…" or "I don't believe in…" is not the culture in academic medicine. Typically what they might say is, PANDAS is not yet well established and distinct from other similar conditions reported in the medical literature. I think you would have to agree with that statement as we have only case reports and some observational studies but no controlled trials of a specific treatment.

    The doctors cannot treat a patient without consent. So if the parents had verbally withdrawn consent for treatment, that would impose a duty upon the doctors to notify protective services immediately.

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