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ME/CFS youngster taken away from parents by government

Discussion in 'Action Alerts and Advocacy' started by Cort, Jun 26, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Talk about problem. North Carolina took Ryan Baldwin away from his parents, accused them of having Munchausen Syndrome and then after they decided that didn't apply accused them of having abused Ryan because they didn't take him to a mental health professional. (According to them they did - with the inevitable results) and not having a primary doctor for him (as if they could find a good one and as if it would have made a difference. So Ryan has sat in a foster home for most of this year. A bizarre story

  2. Jody

    Jody Senior Member

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    Holy cow. That is unbelievable.

    Is he still out of their home?
  3. fresh_eyes

    fresh_eyes happy to be here

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    I just learned of this poor kid's case from the PANDORA newsletter, and was boggled to realize it's in MY county: Buncombe County, North Carolina, USA. Can't find any recent updates via google, just the one line from Pandora - they say he's home for the holidays, but it makes it sound like maybe he's still in foster care most of the time. Does anybody have the latest scoop? MEAgenda?

    ps Admins, could this maybe be moved to Advocacy?
  4. HopingSince88

    HopingSince88 Senior Member

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    This Happened to Me Too

    (This is my first post and have been reading the forum daily since the news about XMRV broke).

    I was told that my daughter (who was about 12 years old at the time in 1990) needed a neurological workup and that the only beds available were in a psych ward, and I was asked to sign papers for her to be admitted. Once they had her, they kept her for about a month. I was allowed to visit once a week for an hour each visit. I was so distraught. It was many years later when I requested a complete copy of her medical record that I found out that we were being 'investigated' for munchhausen by proxy. The record showed that my daughter had been tested for and was found free of any physical, emotional and psychological abuse. It was a devastating situation to live through.

    It happened in Boston, BTW.
  5. fresh_eyes

    fresh_eyes happy to be here

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    Hi HopingSince88. Thanks so much for posting - what a truly nightmare scenario to have lived through. Thank goodness your daughter was returned to you. Whew. I am fairly new to the CFS community (though not to the disease) and I truly did not know that such things were going on - what a horror. How is your daughter doing now?
  6. HopingSince88

    HopingSince88 Senior Member

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    My Daughter

    In 2001 she was approved for disability, after having spent many years (off and on) in the hospital, mostly due to dehydration due to diarrhea and fever. She has IBD, IC, alcohol intolerance, flu-symptoms, daily fever which spikes to 102 or so in the afternoon, PEM, sore throats (with white spots that are not strep and have previously been unable to be identified), severe abdominal pain, enlarged lymphnodes, and insomnia. Although fatigues, she has not had severe weakness or been bed-ridden. These symptoms have been pretty constant since about 1997.

    She had a period of illness (coughing up blood, severe migraines, and severe abdominal pain with a low grade fever) from age 11-13, then she was fine for about 5-6 years. When she was a sophomore in college she had a severe kidney infection caused by a Group B strep. It was about 6 weeks later that all hell broke loose...immediate onset of all the symptoms in my first paragraph, from which she has not recovered.

    She did manage to get through college, but it took 10 years...pacing.

    I have given her information on XMRV, and she is going to speak with her PCP about it. Her current PCP has always believed my daughter had an infectious disease, so we had that one thing going for us.
  7. fresh_eyes

    fresh_eyes happy to be here

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    Wow. What a trial y'all have been through. Sounds like she is hanging in there as well as could possibly be expected, finishing college and all - good for her (and you). Let's hope this XMRV thing brings some answers to all of us. Welcome again to the forums.:)
  8. HopingSince88

    HopingSince88 Senior Member

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    Thanks

    Thank you, FreshEyes! I appreciate your comments and look forward to being more active in the forum.
  9. Tony

    Tony Still working on it all..

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    The cfsknowledgecentre has young Ryan's story here.
    Even Dr Cheney has testified to try and help out.
  10. fresh_eyes

    fresh_eyes happy to be here

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    Hi Tony. Thanks for the link. I wonder where things stand now.
  11. Min

    Min Senior Member

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    here is Ean Proctor talking about his imprisonment and torture at the hands of the UK medical profession when a paralysed child with M.E.

    I don't belive that anything has changed; the psychiatrists have tightened thei stranglehold on our physical illness


    http://www.youtube.com/watch?v=cDeu_OlMivU&feature=related
  12. Tony

    Tony Still working on it all..

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    Melbourne, Australia
  13. glenp

    glenp "and this too shall pass"

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    some time ago

    My foggy brain remembers some time ago receiving a letter about him I think there was a petition , and many sent cards to the boy while in a foster home --it was quite some time ago -- I hope that he at least got our cards - my god its so aweful how long they took. TG he is finally home

    glen
  14. fresh_eyes

    fresh_eyes happy to be here

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    @ Tony - Thank goodness! And thanks for finding that.

    I had not heard anything about the story in the local media, though the family lives very near me - IMO it deserves *a lot* more attention. I had heard of such things in the UK but not here in the US.
  15. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Newspaper Coverage

    This sounds like something that would make a great story for Mountain Express. Might be worth dropping them a note.
  16. fresh_eyes

    fresh_eyes happy to be here

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    Hey, lostinthedesert! You must know our area! :D I agree completely, and I will contact them. (Actually I think I'll try to make sure that's OK with the family first...Perhaps through PANDORA.)
  17. Advocate

    Advocate Senior Member

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    This is horrible! It's every parent's worst nightmare. Did you get any help from any of the CFIDS organizations?
  18. Advocate

    Advocate Senior Member

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    As I recall, the judge would not permit any of our cards to be given to him.
  19. Advocate

    Advocate Senior Member

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    Hi Cort,

    I wish this string were posted in the Action Alerts and Advocacy section--or something like that. I've never seen a place on the web where people who have been accused of MBP or whose children have been taken could come together and take action. Already on this string, someone has come forward.

    Of all the nightmares associated with this disease, whatever you want to call it, I can imagine nothing worse than having your sick child taken.
  20. fresh_eyes

    fresh_eyes happy to be here

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    I agree - can an admin move it please? Thank you hardworking admins!

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