poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
This is a forward message from someone involved in the case:
Briefly, Elizabeth was diagnosed with PANDAS by two doctors in NY February 2012. It first showed up as trouble eating. Blood work showed mycoplasma and Lyme. With antibiotic treatment she improved and did well over the summer. But she took a dive in early September. Her parents took her to a hospital near them, but the hospital felt she needed more than it could offer.
There were two possibilities suggested: Rochester and Boston Children's. The parents wanted her to go to the first place that had a bed; that was at Boston Children's so she went there. BCH immediately decided that Elizabeth's issues were all psychiatric and not medical, not PANDAS. They have refused to introduce antibiotics. And although she was on a gluten & dairy free diet, BCH immediately introduced both. She has had a spinal tap, EKG, EEG, MRI and many, many other tests. The parents were never given any test results. They were told there were "irregularities" in some tests, but they have not been informed what those irregularities are so they still have no idea.
Last Thursday and Friday, the hospital told Jay that Elizabeth was cleared to transfer. He was actively working with Dr. Geller, Dr. Jenike, the OCD Foundation and Rogers Hospital to figure out where would be best for Elizabeth to go. As far as Jay knew, BCH was on board and helping him figure this out.
Then on Monday evening at about 5:30 pm he was told to be at Court the next morning when the State would attempt to take custody based on allegations made by BCH. We were in Court Tuesday morning.
The Boston Globe is going to run a story about this in the next couple of weeks, but this is too long for this child to continue to get this kind of mistreatment.
The message contained many contacts to send a demand that the hospital release this child to her parents so they might make better arrangements for her care. But I have included just two, because that might be doable. Here they are, if you can take a few minutes to email:
Please mention the child's name, Elizabeth Wray, in the subject line. If you don't feel able to compose your own message, here is one you can use:
The hospital has not helped this child and should release her immediately to her parents so they can arrange for her care. This case will not help your reputation.
[ 10-04-2012, 01:41 PM: Message edited by: poppy ]
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I don't know the situation, but it sounds terrible. I sent your written message to the email with my name.
"First of all, while I have done my best to read your emails, it is impossible for me to respond to you individua lly given the extraordinary pressure I am under in helping this family. In addition, I have probably received more than 1000 emails in the past 48 hours so the only way I can communicate is through bulk mailings. Jay and Carrie are deeply appreciative of your kind words and are taking great strength from the sheer numbers of those who they know are behind them.
Things are not good with Elizabeth. She remains at Boston Children's Hospital. BCH still refuses to recognize that its "treatment" is a complete failure. She continues to decline. She can no longer walk. She barely speaks. Earlier this evening, I listened to her screaming and wailing in the background from her bed as her brokenhearted father tried to bring me up to date.
There will be a piece in the Boston Globe Magazine about PANDAS within the next three weeks. They contacted me directly as a result of your efforts...someone posted or blogged regarding my earlier emails and that is how the Globe found the story and me. Based on my interview today, which lasted for over an hour, I expect this situation will receive a great deal of attention. Keep posting. Keep blogging. It makes a difference.
I want to be 100% clear that these parents did NOTHING wrong. They took the exact same steps that you or I would have taken to help our children. This could have happened to any one of us. They are living every parent's nightmare...losing custody of their child for trying to do the right thing. And these parents need your help.
The Wrays have given me written permission to share the following information with all of you and the media.
Briefly, Elizabeth was diagnosed with PANDAS by two doctors in NY February 2012. It first showed up as trouble eating. Blood work showed mycoplasma and Lyme. With antibiotic treatment she improved and did well over the summer. But she took a dive in early September. Her parents took her to a hospital near them, but the hospital felt she needed more than it could offer. There were two possibilities suggested: Rochester and Boston Children's. The parents wanted her to go to the first place that had a bed; that was at Boston Children's so she went there. BCH immediately decided that Elizabeth's issues were all psychiatric and not medical, not PANDAS. They have refused to introduce antibiotics. And although she was on a gluten & dairy free diet, BCH immediately introduced both. She has had a spinal tap, EKG, EEG, MRI and many, many other tests. The parents were never given any test results. They were told there were "irregularities" in some tests, but they have not been informed what those irregularities are so they still have no idea. Last Thursday and Friday, the hospital told Jay that Elizabeth was cleared to transfer. He was actively working with Dr. Geller, Dr. Jenike, the OCD Foundation and Rogers Hospital to figure out where would be best for Elizabeth to go. As far as Jay knew, BCH was on board and helping him figure this out. Then on Monday evening at about 5:30 pm he was told to be at Court the next morning when the State would attempt to take custody based on allegations made by BCH. We were in Court Tuesday morning.
The State has been placed in charge of Elizabeth's care (because it has custody), but the Judge specifically instructed that she may not be moved to the hospital's locked psych unit. I do not fault the Judge for his decision on temporary custody. It's hard to explain in a few sentences... but when a Judge is confronted with the kind of accusations that were leveled against the Wrays, it would have been very difficult for him to simply dismiss the petition (although I tried to get him to do that). He heard me though, and he protected her as much as he felt that he could - given the circumstances - by specifying that she should not be moved pending his final decision. We are scheduled to go back to court on October 23rd. Her parents are in agony knowing that she may suffer for another three weeks at BCH.
Below is the list of the names I was given by the State of those at BCH who spoke with Child Protective Services about having the State of Massachusetts take custody of Elizabeth away from her parents. I have provided as much contact information as possible. Call them. Email them. Make them understand that there are thousands of parents standing behind the Wrays. You may want to begin by sending to this email which is a general for the hospital but I want you to do more http://childrenshospital.org/email.cfm?s=1394&c=7&u=webteam
I want you to call the hospital and ask for these people. I want you to leave voicemails if you don't reach them. They need to know that this movement is only going to grow. Will you do that for us? The general number at the hospital is 617-355-6000. I want the switchboard jammed. Begin every call with ``I'm calling about Elizabeth Wray. Please connect me to ...'' I want your voices to be so strong and so many that - maybe - then they'll begin to get it. I want them to know that parents are not longer going to bring their children to BCH. And I want them to know that they cannot hide behind the cloak of the State.
As far as emails, from the few that I know it appears that the pattern is [email protected]
Here are the specific people I was told that the State spoke with: Dr. Othman Mohammad Dr. Simona Bigourno Dr. Gary Gosselin [email protected] fax 617-730-0917 Dr. Lydia Shrier 617-355-7181 Elizabeth Holleran, child abuse social worker Deb Sorentino, child protection team Ellen Rothstein, Esq. Associate General Counsel [email protected]
Others to contact would be: James Mandell, Chief Executive Officer Sandra Fenwick, President & Chief Operating Officer Stuart Novick, General Counsel 617-355-4937 [email protected]
Many of you have asked if you can help with a donation. Jay wants to be clear that he is, "not the type to ask for money," but if you want to help he will gratefully accept. He is the family breadwinner and is presently on medical leave from his job where he has worked for the same employer in customer service for fifteen years. His family home is more than five hours from Boston. His family has living expenses in Boston, a huge liability for all the "co-pays" that will be charged for hospital stay, legal fees, expenses at home to manage, and no end in sight. He asks that checks be made to ``Beth Maloney Esq. Trust Account'' and indicate "for Elizabeth Wray" on the check. The mailing address is Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046
I wish I could write more. I am so exhausted that can only imagine how the family feels. I keep picturing Sammy in that hospital bed, unable to walk, screaming as they try to force food down his throat.
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I wonder if her two docs in NY could do something--like contact Dr. D in Boston and somehow get him to intercede at that hospital on this girl's behalf?
I wonder if they ever saw Dr. J.?
Just trying to think of what else can be done.
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
so sad. not the first time this has happened. i dont know what to do except pray for you wonderful ppl trying to help
maybe a call to dr J in ct to get his suggestions on how to proceed
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Oh dear, this just sounds awful.
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poppy
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Member # 5355
posted
Unfortunately, no lyme doctor can intercede in such a situation. At this hospital, they clearly belong to the IDSA camp and if they can behave this way to an obviously sick child, the only thing that would help the situation is outing them to the public and pressure from people, so they know they are being watched.
This kind of scenario is always a possibility when a lyme person goes to a hospital.
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surprise
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Member # 34987
posted
She has the movement of PANDAS/PANS behind her, quite formidable.
PANDAS, a certain set of neuro symptoms in children, OCD, Tourette's, eating disorders, rages, age regression, separation anxiety, etc.
originally thought to be strep bacteria induced only, the antibodies going rouge and attacking the basal ganglia part of the brain.
However, large scores of us have found it is also Lyme, mycoplasma, and TBI bacterial infection induced.
Hence, the name change from PANDAS to PANS.
Interesting to note the next Lyme conference, in Boston none-the-less, is set to include PANDAS/PANS MD's.
This PANS is uncovering Lyme in families. It did for us. Was the door. It is extremely difficult.
Very REAL. Don't need to convince you guys, or the thousands of families dealing with it.
This horrible event at Boston hospital may bring more light.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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poppy
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Member # 5355
posted
up
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
There is now a gag order on this (from judge)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Well the rest of us DO NOT have not a gag order imposed on us. So we are free to speak about this situation and take action.
From my post above (quoting Lyme Love) and broken up for easier reading:
Below is the list of the names I was given by the State of those at BCH who spoke with Child Protective Services about having the State of Massachusetts take custody of Elizabeth away from her parents.
I have provided as much contact information as possible. Call them. Email them. Make them understand that there are thousands of parents standing behind the Wrays.
You may want to begin by sending to this email which is a general for the hospital but I want you to do more
I want you to call the hospital and ask for these people. I want you to leave voicemails if you don't reach them. They need to know that this movement is only going to grow. Will you do that for us?
The general number at the hospital is 617-355-6000. I want the switchboard jammed. Begin every call with ``I'm calling about Elizabeth Wray. Please connect me to ...''
I want your voices to be so strong and so many that - maybe - then they'll begin to get it. I want them to know that parents are not longer going to bring their children to BCH. And I want them to know that they cannot hide behind the cloak of the State.
As far as emails, from the few that I know it appears that the pattern is
Here are the specific people I was told that the State spoke with:
Dr. Othman Mohammad Dr. Simona Bigourno Dr. Gary Gosselin [email protected] fax 617-730-0917 Dr. Lydia Shrier 617-355-7181 Elizabeth Holleran, child abuse social worker Deb Sorentino, child protection team Ellen Rothstein, Esq. Associate General Counsel [email protected]
Others to contact would be:
James Mandell, Chief Executive Officer Sandra Fenwick, President & Chief Operating Officer Stuart Novick, General Counsel 617-355-4937 [email protected]
Many of you have asked if you can help with a donation. Jay wants to be clear that he is, "not the type to ask for money," but if you want to help he will gratefully accept.
He is the family breadwinner and is presently on medical leave from his job where he has worked for the same employer in customer service for fifteen years.
His family home is more than five hours from Boston. His family has living expenses in Boston, a huge liability for all the "co-pays" that will be charged for hospital stay, legal fees, expenses at home to manage, and no end in sight.
He asks that checks be made to ``Beth Maloney Esq. Trust Account'' and indicate "for Elizabeth Wray" on the check.
The mailing address is Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046
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poppy
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posted
I agree. The gag order was on the parents, not on us. Judges have no control over us in this situation. The protest is going ahead as soon as they get a permit.
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beaches
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posted
UP for help for this family
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surprise
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-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
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Member # 38251
posted
This is just shocking. That picture of her parents was clearly taken in the hospital. You can see the worry and shock on their faces. Poor sweet Elizabeth and her parents. My God. Who in their right mind at Boston Children's Hospital could condone removing this girl from her parents' custody? What a travesty, not to mention a slap in the face to the rights parents have in choosing their child's medical care.
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poppy
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posted
So, another place to post oppostion to their behavior toward this child is the facebook page of Boston Children's hospital.
I don't do facebook but many other people do. So have at it.
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beaches
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posted
I'm not on FB either. Can people please post comments about this? Yep, "have at it" -- I like that Poppy.
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beaches
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posted
Can anyone get this family some info on Dr. J, LL peds and Dr. B, immunologist in CT?
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poppy
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posted
According to the story, she was getting treated, but when cipro was added to the protocol, her symptoms increased drastically (herx!) and the parents felt unable to cope and looked for a hospital.
But of course, there is no hospital that will deal adequately with this kind of situation, which the parents found out. This has been learned the hard way by a number of lymed people and their families.
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poppy
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posted
Here is the petition at change.org for Elizabeth:
Someone maybe should post this link on the hospital's facebook page. I hope they will use this with the media, instead of just sending it to the hospital which will put it in the round file.
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beaches
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posted
So glad to see this petition. I will sign it. But I am not on FB so cannot post that link to the hospital's page. Hopefully someone here will.
Poppy, I always heard that unwanted/unwelcome info went into file 13!
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