Skip to comments.Vanity:Freeper Help Needed (Boston/PANDAS Syndrome)
Posted on 10/04/2012 8:27:01 PM PDT by Hazelwood Redneck Brain Trust
A lady from my church commented on Facebook this evening and I just happened to catch it - it was in regards to a medical condition called PANDAS. I know that one of her kids has an obscure medical condition but I don't know the particulars.
So,I read the big long story* on Facebook (Short version - child has PANDAS & gets sick. Parents take child to Boston Childrens Hospital. Hospital is acting strangely. Child Protective Services takes control of child. Prelim hearing gives temporary custody to State. Child is still hospitalized.)
I did "Bing" searches on most names given, some came up as legit (for profession but not in tie w/story), and one - a doctor - only had one result.
That one result was the blog Mindless Chatter Of A Busy Mom. (Which is why it is referenced as the source)
*Here is the Facebook post that originally drew me in:
First of all, while I have done my best to read your emails, it is impossible for me to respond to you individually 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 Elizabeths 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 Im calling about Elizabeth Wray. Please connect me to ... I want your voices to be so strong and so many that - maybe - then theyll 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 firstname.lastname@example.org
Here are the specific people I was told that the State spoke with:
Dr. Othman Mohammad
Dr. Simona Bigourno
Dr. Gary Gosselin email@example.com 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
Others to contact would be:
James Mandell, Chief Executive Officer
Sandra Fenwick, President & Chief Operating Officer
Stuart Novick, General Counsel 617-355-4937 Stuart.Novick@childrens.harvard.edu
This is a link to the entire leadership team http://www.childrenshospital.org/about/Site1394/mainpageS1394P4.html
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.
Be our voice.
I’d like to see a map showing the prevalence of this.
unusual these days to end up with rheumatic fever but it can happen
Freepmail me immediately. I’ve been dealing with this with my son since June 28th.
In the mean time, go watch a YouTube video “Saving Sammy”.
There is a family in our town who have 3 sons dealing with this strange syndrome. I’m going to forward this thread to a friend of mine who is a nurse and friend of this family. From what she has been telling us this is one heartbreaking malady.
We are in the Boston area.
My MD has great success with treating PANDAS with Low dose Naltrexone (LDN). This is an old out of patent cheap drug that modulates the immune system.
This child also has been diagnosed with Lyme, and I suspect that is a factor in this situation.