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Tomorrow in Boston

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

  1. My MAIN issue is that This hospital has a very long history of reporting parents of PANDAS children to CPS. I would like to see how many PANDAS patients families get treated this way compared to other diseases. I personally had an issue with this hospital regarding PANDAS (not CPS) and know the wray family is the 2nd PANDAS family in 2 months that had CPS involved. The other family is too scared to come forward

    I dont have every fact in this case but I know this hospital is ANTI PANDAS probably because they didn't discover it and waaay behind MGH. Thats my 2 cents.

    I certainly welcome any help and if you cant thats fine. What they are doing(not doing)for PANDAS

    Kids is really wrong.

    I dont really know what else to say!
  2. Anonymous Member

  3. Anonymous Member

    Hey pandasnetwork.org, I just want you to know that I have decided to hate everyone putting a copyright symbol beside marketing jingos related to healthcare. So I am hating you hard right now for: "Know the Symptoms, Change the Outcome©"

    I want all y'all MBA wankers to get out of my hospital and go back to dodgy real estate and forex enterprises.
  4. "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."

    Let us suppose the parents had heard a bunch of DAN stuff, she still has very indicative labs, and they were seeking a second opinion from a psychiatrist at Mass General (so not full of antipsychiatry terrors) who is a Pandas specialist. Believing DAN stuff does not make one an unfit parent and should not be grounds for removing custody, particularly when they are affirmatively seeking the views an established doctor, who could educate them if necessary.

    "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?"

    Antiobiotics are the frontline treatment, but sometimes they are not sufficient. In more complicated cases like hers, IVIG is often called for. She was making progress on antibiotics, until cipro was introduced in August. This is a difficult antibiotic and may have been a poor medical choice or one that was inexpertly managed.

    There is no indication Elizabeth has psychosis (though some Pandas kids may esperience it), nor that she has tics, which are often treated with anti-psychotics. People are not opposed to these drugs where called for, but they should be used as secondary treatments and dosing has to be carefully managed because Pandas kids are particularly sensitive to these drugs (per the NIMH guidelines). Antipsychotic drugs by themselves generally do not help these kids.

    What she does have is severe OCD. SSRIs are used for OCD but again Pandas kids do not improve if they used by themselves and they can get worse if they are given the normal dosing. SSRIs can be helpful as supplemental treatment if antibiotics and IVIG do not do the trick.

    More importantly, people are against kids being treating for years with just psychiatric drugs that may take the edge of their symptoms but almost never resolves them when in many cases a simple course of antibiotics at the outset could have taken care of the problem.

    I happen to know the story of the protester pictured with a sign saying antibiotics saved her daughter and anti-psychotics killed her son. The sign in my view was more emotional than helpful. Her daughter was initially diagnosed with conversion disorder and given risperadol, an anti-psychotic. (Itself a bit weird--no medications is recommended for conversion disorder.) She was then diagnosed with Pandas by one of the big name specialists and received antibiotics; she began recovering in days, but she has needed IVIG as well. Her son showed all the signs of undiagnosed Pandas several years earlier, He moved away from home and got treatment with a doctor of ostepathy who gave him Xanax, a very addictive drug that is not recommended for use for greater than a month and which is not among the psychiatric drugs one would use for Pandas. Eventually it did him in.
  5. Anonymous Member

    Maybe the patients are making claims that are not backed by a consensus within the medical literature?

    Maybe we are here now because Dr [redacted] in Upstate New York has been advised to launch a preemptive attack upon his critics before he is brought before the board of medicine?

    You see I can speculate from pretty much no evidence just as well as you can.
  6. Anonymous Member

    I can't speak for PANDAS, but with Lyme, the antibiotics don't make it worse, even though the patient may appear to be getting worse due to herxing when in fact they're working as they're supposed to, and the spriochetes are dying. (Google Jarisch-Herxheimer reaction as I'm too lazy to go into the gory details.)
  7. "Maybe the patients are making claims that are not backed by a consensus within the medical literature?

    Maybe we are here now because Dr [redacted] in Upstate New York has been advised to launch a preemptive attack upon his critics before he is brought before the board of medicine?

    You see I can speculate from pretty much no evidence just as well as you can."

    I was given the names of the doctors but had never heard of them. I was listening intently for Dr. J's name because I knew that certainly would have raised BCH hackles, but he definitely was not one of them.
  8. Anonymous Member

    Dox or STFU.
  9. Anonymous Member

    I think we have our hands full with PANDAS right now. Best we avoid Lyme, chronic yeast, and/or XMRA.
  10. Anonymous Member

    ^XMRV I mean.
  11. Anonymous Member

    It is my understanding that Elizabeth was also diagnosed with Lyme.
    • Agree Agree x 1
  12. Re: lyme--she was CDC positive on Western Blot.

    Have no idea what dox or STFU means.
  13. Anonymous Member

    IMHO it is not a satisfactory outcome in treating a young girl to render her a drugged up zombie and say 'Look we fixed her.' If I had a child in this situation I would be prepared to give anything to have her back to being herself. I wish the hospital would take a little more nothing ventured nothing gained attitude into the handling of Elizabeth. There are worse things in the world than having to admit you may have been wrong.
  14. I must have missed something during this thread as it seemed to be a rational discussion and now seems to be heading down hill?

    Lyme in itself could use its on thread IMHO.
  15. Pandas Mom, can you explain this apparent contradiction:
  16. Pique Member

    Pandas Mom please learn to quote properly. It helps with readability of your posts.

    Lower right of the post you wish to quote is a 'reply' button. Click on that and the entire post will appear in your reply box. You can delete a portion of it if you wish to only respond to part of the other user's post. Please ensure you type your own response before or after the 'quote' or the 2 posts will become blended together.

    Edit:
    It means please provide proof of your statement or allegation...or shut the fuck up. Don't take offense to the extreme language, that's just the way anonymous rolls.
  17. Ok I thought that we covered this already?


    PANDAS/PANS is an autoimmune disease that causes Mental illness symptoms

    So, you can give a PANDAS kid psych meds all day and it is really just a bandaid (if it works at all)

    You need to fix the cause. Psych meds will not fix the autoimmune attack on the brain or kill bacteria. Psych meds can take 4-6 weeks to even start to see any improvements..

    now if you are giving psych meds, and you do help the ocd or anxiety you are really not able to tell clearly what the immune system is doing. The only way to know that these kids are having an immune response is an increase in symptoms.

    In my experience ALL psych symptoms clear when the infection is treated and with use of IVIG. So why give a psych med?
  18. "Dox" means documents that support what you are saying. You can cut and paste or "copypasta" from a source then post a link to that source under the part you quote.

    "STFU" means "Save That For Unicorns," which is another way of saying

    5c1eb38d97461877fdececf782d98f85.jpg

    More info about Anonymous culture here.
  19. Pique Member

    lol^^

    (and I even knew what was coming....gawd you'd think I'd learn)
    • Agree Agree x 2
  20. Your post is not dox. For a medical claim you need to quote a published, peer reviewed article that has not been ripped to shreds by genuine peers.
    • Agree Agree x 1
  21. Anonymous Member

    Lyme = PANDA'S children
    pandas-kids_1822703i.jpg

  22. this child probably needs IVIG and I believe there were some insurance issues surrounding this patient.

    I dont think WE (PANDAS advocates) want her on antibiotics mostly. WE dont know all the facts and maybe never will. I think we agree strongly that this patient be transferred to MGH or at least let a PANDAS expert in by court order
    • Agree Agree x 1
  23. Anonymous Member

    View attachment im_the_panda_expert_speckcase-p176210130517604288b
  24. Hope I am doing this quote thing right. There is no contradiction. I was told the names of the two doctors in a conversation. I had never heard of them before and so don't know them. I also don't remember the names as I was focusing more on whether Dr. J was one of them (he wasn't) as I knew that surely would have set BCH off.
  25. Anonymous Member

    6a00d8357f3f2969e2015393ab545a970b-400wi.jpg
  26. This was in connection with kids often getting worse on psych meds--this is in the NIMH document already posted. It discusses how Pandas children are often very senstive to these medications and dosing must start very low and go up very slowly.

    What I'd like are docs showing that kids can completely resolve their OCD/tics and other troubling symptoms on just psych meds....
  27. Anonymous Member

    I would like to lose about 20 lbs.
  28. This was the part I wanted dox for:
    You replied:
    From http://intramural.nimh.nih.gov/pdn/web.htm

    I think if the SSRIs did not work at all if the child is not taking antibiotics at the same time, the person who wrote this article would have said so.

    tl;dr: You fail it because exaggeration.
  29. Thank you for your explanation.
  30. Anonymous Member

    OCD/tics are caused by carpet cleaners and related poisons, under the right conditions touch assists combined with the Purification Rundown will effect a phenomenal 100% cure rate!
  31. Anonymous Member

    Was she positive for Lyme antibodies on the ELISA before the Western Blot was done?
  32. Hey Pandas people,

    Did you guys know that the first serotonin reuptake inhibitor used for depression was initially introduced as an antibiotic?

    Trufax!

    ___________
    NB: You have now completed Anonymous 101, including how to quote, Dox or STFU, GTFO, copypasta, RickRoll, tl;dr aka "too long; didn't read," you fail it, Purification Rundown, and trufax. Register a username and set your user preferences for Thunderdome for advanced courses covering such topics as fires and how to die in them as well as goatse.
  33. Anonymous Member

  34. Had you taken chemistry, organic chemistry, biochemistry, molecular biology, physiology, plus medical school, you might now have some understanding of the arbitrary boundaries around the concept, "psych med."

    Category errors. You makes them.
  35. Sorry--don't know answer to that one. ELISA may not have been done. My daughter was tested for Lyme at her pediatrician's a few years ago (not in connection with possible PANDAS) and they didn't do ELISA but went straight to Western Blot. Perhaps some new trend? Don't know much about Lyme.
  36. Why would she need to be positive on the ELISA before the Western Blot? The ELISA is a screening, the Western Blot is much more accurate and detailed. The only reasons the ELISA is done at all are that it is much faster than a Western Blot, and that it is a quick screening to see if a WB is needed. If you are CDC positive for Lyme, you are positive for Lyme. The CDC criteria is for surveillance purposes only so it is more difficult to get a positive result. The CDC wants to err on the side of not including *any* false positives so therefore they remove the most highly specific borrelia (Lyme) bands from their Western Blots, such as band 31. The bands they removed are so specific to borrelia that they were used to develop the Lyme vaccine. Though the Lyme vaccine is no longer used, the CDC removes those highly specific bands from their criteria because anyone who received the Lyme vaccine would test positive whether or not they had Lyme. So, if you are CDC negative for Lyme you can still actually have Lyme Disease, but if you are CDC positive for Lyme, you have Lyme.
  37. Hate to disagree with Boston Advocate but I can tell from following the forum where Pandas parents exchange experiences that a number of them supplement antibiotic treatment with anti-psychotics and SSRIs, particularly for their kids who may have gone undiagnosed for a long time.

    It could be the case that if they could get IVIG for their kids they wouldn't need these medications. IVIG is expensive and only the real Pandas experts know how to administer it properly for this disorder so it is out of reach for many.
  38. Anonymous Member

    Do they know that the posts from 'Anonymous' (like this one) are not all from the same forum member?

  39. let me be clear. I said in my expereince (with MY kids) yes this is the case and I am not delusional.

    I am not saying this is the case for all PANDAS kids.

    The people posting your cute little pics and graphics think you can read a few web pages and be an expert on PANDAS ? try living it. Then you can debate the validity of my experiences.
  40. yeah I have figured that out! I thought I was dealing with somone with split personalities.

    We are looking for help and I have heard of annonymous. I have never been in contact and dont really know how it all works. But with that said I dont think I can change any of your minds on this topic, so best wishes to you all! :D

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