Re: Update on being taken away by CPS with the help of Boston Children's Hospital

[Guest guest]

Marcia

Readers of the Boston Globe would be very interested in this story in fact they would be outraged. Perhaps emails to Globe writer, Joanna Weiss. She was written before about our children. She may be a sympathetic ear in this case. Her contact information http://www.bostonglobe.com/staff/weiss

An article she wrote for regarding the autism-vaccine debate:

http://www.boston.com/bostonglobe/editorial_opinion/oped/articles/2010/02/27/seeking_common_ground_in_the_autism_vaccine_debate/?page=2

Personally I am no fan of BCH. I decided to cut ties after a few unpleasant experiences with the docs there. I just don't like their attitude.

Subject: Update on being taken away by CPS with the help of Boston Children's HospitalTo: mb12valtrex Date: Thursday, October 4, 2012, 12:26 PM

This information came from Beth Maloney, author of Saving Sammy and attorney for the Wray family. The things Beth said directly I placed in quotes. Wray was taken away from her parent’s custody because Boston Children’s Hospital thinks PANDAS—an auto immune disease which can make the body stop working and often manifests itself with Tourette’s-like symptoms and facial tics. ’s Parents are grateful for all your support and blogging to bring this to the attention of the media and have given Beth permission to share the following with you.

Update on

“Things are not good with . 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.â€

Call to Action

“Please be our voice. I keep picturing Sammy in that hospital bed, unable to walk, screaming as they try to force food down his throat. “This could have happened to any of us who were just trying to get proper medical treatment for our children.†I want you to call the hospital and ask for the people listed below in “Who to Contactâ€. “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 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.†We need to write, call, and blog and basically keep this in the forefront. Contact media or anyone else who can help this family.

Make a phone call

I just made my first call to Boston City Hospital Switchboard, told them I was calling about Wray. I hope you all call. I left my name and telephone # and made my message clear. Beth said you could say something on the order of,â€â€¦ when parents do everything right and lose custody of their child due the actions of doctors - the very people to whom they turned for help - it causes a crisis in confidence that words cannot describe. We are most vulnerable when our children are sick. We invest our trust and hope in their doctors. If we cannot trust the very people to whom we turn for help, whom do we trust? “ I hope that you and Children's can make this situation right and help to return Wray to her family.

Send an email email addresses listed below

Sample email sent by a parent

It is very disturbing to read that Wray was taken into child custody from loving parents after she was taken to Boston Children's to be treated for PANDAS as was clearly diagnosed by other doctors in Feb. 2012 and being treated for.

This is very scary news for other parents like me to hear, and I would tell my loved ones and friends to run in the opposite direction rather than to go anywhere near Boston Children's for any illness - after hearing how these poor parents seeking help from a prestigious Boston Hospital were treated. I can only imagine the pain - and the cost - of being stuck in Boston trying to get their daughter back.

Contact the Media

Here is some background information for the Media

“Briefly, 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 '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 was cleared to transfer. He was actively working with Dr. Geller, Dr. Jenike, the OCD Foundation and Hospital to figure out where would be best for 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 ’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.â€

Who to Contact

“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 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.â€

“Start by sending to the general emails for the hospital and public affairsâ€

:http://childrenshospital.org/email.cfm?s=1394 & c=7 & u=webteam public.affairs@... But then do more…

“Here are the specific people I was told that the State spoke with:â€

Dr. Othman Mohammad othman.mohammad@...

Dr. Simona Bigourno simona.bigourno@...

Dr. Gosselin gary.gosselin@... fax

Dr. Lydia Shrier lydia.shrier@... phone

Holleran, child abuse social worker elizabeth.holleran@...

Deb Sorentino, child protection team deb.sorenino@...

Ellen Rothstein, Esq. Associate General Counsel ellen.rothstein@...

Mandell, Chief Executive Officer james.mandell@...

Fenwick, President & Chief Operating Officer sandra.fenwick@...

Stuart Novick, General Counsel stuart.novick@...

You might want to send one email blast to the general emails and then cc the people who the state spoke with. But it probably would be more effective to email them individually.

To:http://childrenshospital.org/email.cfm?s=1394 & c=7 & u=webteam;public.affairs@...

CC: othman.mohammad@...; simona.bigourno@...; gary.gosselin@...; lydia.shrier@...; elizabeth.holleran@...; deb.sorenino@...; ellen.rothstein@...; james.mandell@...; sandra.fenwick@...; stuart.novick@...

Donations –for expenses this unexpected nightmare has caused

Jay wants to be clear that he is, "not the type to ask for money," However this is not only about him. “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 Wray" on the check.â€

The mailing address is:

Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046

[Guest guest]

This is just terrible, have posted about it in my groups on FB. Please keep us uptodate poor child and parents, so shocking and sad xx

[Guest guest]

what about Swedo??   How can PANDAS be non existent if the NIH has money going to her research....can someone call her??

 

This information came from Beth Maloney, author of Saving Sammy and attorney for the Wray family.  The things Beth said directly I placed in quotes.  Wray was taken away from her parent’s custody because Boston Children’s Hospital thinks PANDAS—an auto immune disease which can make the body stop working and often manifests itself with Tourette’s-like symptoms and facial tics.  ’s Parents are grateful for all your support and blogging to bring this to the attention of the media and have given Beth permission to share the following with you.

Update on “Things are not good with .  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.”

Call to Action“Please be our voice. I keep picturing Sammy in that hospital bed, unable to walk, screaming as they try to force food down his throat. “This could have happened to any of us who were just trying to get proper medical treatment for our children.” I want you to call the hospital and ask for the people listed below in “Who to Contact”.  “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 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.”  We need to write, call, and blog and basically keep this in the forefront.  Contact media or anyone else who can help this family.  

Make a phone callI just made my first call to Boston City Hospital Switchboard, told them I was calling about Wray.  I hope you all call. I left my name and telephone # and made my message clear.  Beth said you could say something on the order of,”… when parents do everything right and lose custody of their child due the actions of doctors - the very people to whom they turned for help -  it causes a crisis in confidence that words cannot describe. We are most vulnerable when our children are sick.  We invest our trust and hope in their doctors.  If we cannot trust the very people to whom we turn for help, whom do we trust? “ I hope that you and Children's can make this situation right and help to return Wray to her family.

Send an email  email addresses listed below

Sample email sent by a parentIt is very disturbing to read that Wray was taken into child custody from loving parents after she was taken to Boston Children's to be treated for PANDAS as was clearly diagnosed by other doctors in Feb. 2012 and being treated for. 

This is very scary news for other parents like me to hear, and I would tell my loved ones and friends to run in the opposite direction rather than to go anywhere near Boston Children's for any illness - after hearing how these poor parents seeking help from a prestigious Boston Hospital were treated. I can only imagine the pain - and the cost - of being stuck in Boston trying to get their daughter back. 

Contact the Media Here is some background information for the Media

“Briefly, 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 '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 was cleared to transfer.  He was actively working with Dr. Geller, Dr. Jenike, the OCD Foundation and Hospital to figure out where would be best for 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 ’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.”

Who to Contact“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 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.”  

“Start by sending to the general emails for the hospital and public affairs”:http://childrenshospital.org/email.cfm?s=1394 & c=7 & u=webteam public.affairs@...  But then do more…

“Here are the specific people I was told that the State spoke with:” Dr. Othman Mohammad  othman.mohammad@...

Dr. Simona Bigourno  simona.bigourno@...

Dr. Gosselin gary.gosselin@... fax

Dr. Lydia Shrier   lydia.shrier@...  phone

Holleran, child abuse social worker  elizabeth.holleran@...

Deb Sorentino, child protection team  deb.sorenino@...

Ellen Rothstein, Esq.  Associate General Counsel   ellen.rothstein@...

Mandell, Chief Executive Officer  james.mandell@...

Fenwick, President & Chief Operating Officer  sandra.fenwick@...

Stuart Novick, General Counsel       stuart.novick@...

 You might want to send one email blast to the general emails and then cc the people who the state spoke with.   But it probably would be more effective to email them individually.

 To:http://childrenshospital.org/email.cfm?s=1394 & c=7 & u=webteam;public.affairs@...

CC: othman.mohammad@...; simona.bigourno@...; gary.gosselin@...; lydia.shrier@...; elizabeth.holleran@...; deb.sorenino@...;  ellen.rothstein@...; james.mandell@...; sandra.fenwick@...; stuart.novick@...

 Donations –for expenses this unexpected nightmare has caused

Jay wants to be clear that he is, " not the type to ask for money, " However this is not only about him. “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 Wray " on the check.”  

The mailing address is:Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046