Time to Make Some Noise

[mama2alex]

From Beth Maloney's email last night: "Please reach out to any media contacts you may have. In the next few days, I will circulate an action plan."

 

It sounds like Beth is formulating some plans based on her intimate knowledge of the situation. If anyone is planning to move forward with any of the great ideas above, I would coordinate with Beth. You can email her at info@savingsammy.net - she is very responsive to email, but is probably getting a lot of them right now, so make yours stands out as something she needs to respond to asap."

 

ko's mom: You may want to email Beth with the ideas your friend provided - I'm sure she would appreciate the input.

[mama2alex]

From Beth Maloney's email last night: "Please reach out to any media contacts you may have. In the next few days, I will circulate an action plan."

 

It sounds like Beth is formulating some plans based on her intimate knowledge of the situation. If anyone is planning to move forward with any of the great ideas above, I would coordinate with Beth. You can email her at info@savingsammy.net - she is very responsive to email, but is probably getting a lot of them right now, so make yours stands out as something she needs to respond to asap."

 

ko's mom: You may want to email Beth with the ideas your friend provided - I'm sure she would appreciate the input.

[kos_mom]

Here is a link to the contact pages of a talk rado station in Boston. I located another one, but it had no contact information I could find.

 

http://www.newstalk969.com/contactus.aspx

 

Also, on the Saving Sammy webite, a poster mentioned this contact at Children's:

 

RE: The Wray Family...Dr Claire McCarthy is a primary care physician and the Medical Communications Editor at Boston Children’s Hospital. She has been named one of the Top Ten Online Influencers because of her very visible blogs on children's health. I have written to her in the past hoping that she would spread awareness of PANDAS. Her response was that she has never personally dealt with a PANDAS case. Perhaps she will get involved now.

 

You can email her at claire.mccarthymd@childrens.harvard.edu, or follow her on Twitter @drClaire.

[kos_mom]

Mama2alex--thanks for the message. Will email.

[tpotter]

Beth said she would post more as to what we can do to help out. I think we should wait to see what she recommends, as she has taken this case, and knows everything about it.

Edited October 3, 2012 by tpotter

[airial95]

Anyone use Twitter? Starting a twitter trend with the hastag #BCHreturnelizabeth might get some traction. If enough people start posting to it, new outlets tend to pick up on things that start trending...

 

That said - I have NO idea how to use twitter - I'm just trying to pretend I'm not pushing 40

[danddd]

Yes! I totally agree with Ko's mom and LLM- a rally of some sort! Since beth is an attorney, she would know the legalities of it. has anyine run it by her? i dont think you can go near the hospital, we could get in trouble for getting in the way of emergencies and such (even if we are not). but if we all came together!! so many of us!! it would bring lots of attention, dont you think? we'd be respectful though, not rude or crazy.

 

dan

[mom md]

###### hath no fury like a PANDAS parent. If BCH had any idea they would retreat now.

[MomWithOCDSon]

###### hath no fury like a PANDAS parent. If BCH had any idea they would retreat now.

 

All they need to do is take a peek at their Facebook page! That should give them an "idea" of the fury they're up against!

[mdmom]

If you are wanting to donate money to help this family, I have the information on how to do this from Beth Maloney. Please PM me your personal email address if you would like the info and I will forward you the email she sent me.

 

It didn't seem appropriate to post the info on a public forum.

Edited October 4, 2012 by mdmom

[EAMom]

I'm not particularly FB savvy but am all for a coordinated effort. This is horrific. EAMom or nancy- not to put you in the coordinator's seat, but aside from stories for a reporter, is there any action that IOCDF feels would be more or less effective? Emails and posts are easily deleted by administrators who don't want to hear the noise. And as Kimballot said, it's harder to lay out a rational objection when you don't have many details. Not trying to pry into this family's personal grief or make their story more public than they'd like. There is, after all, a child's right to privacy.

 

It seems like there'd be no shortage of support from this forum, the FB pages, the non-profits. But there should be a coordinated, focused effort. This could really be a rallying point. But not knowing hospital politics, what makes administrators pay attention (aside from news stories, which seems to be underway)?

 

Second, if appropriate, has anyone closer to the situation found out what sort of support this family needs? Is there a way to send them messages of support? Is there a need to create a donation site for legal defense? (what was the site that was used to raise money for that bullied bus monitor in NY?)

 

It seems like this is a role for one of the non-profits to coordinate - whether it be one of the FB groups, Beth, IOCDF - we are the soldiers. Tell us where to march. Please let us know what your contacts have to say. thanks!

 

LLM I just requested you be added to a private FB group (I thought you were already a member).

 

I hope Dr. Jenike is going to get involved (somehow) since the IOCDF is. It is weird that Mass General and BCH have such opposing views on PANDAS (since both are associated with Harvard Medical School).

 

I don't know if this has already been posted, but here is another e-mail to send "complaints" (in additiont to BCH's facebook page and the other places) public.affairs@childrens.harvard.edu

 

I think having Beth involved (as a lawyer, advocate, pandas parent) is great. However, the IOCDF/Jenike carries a lot of clout (esp. in the medical community, above and beyond that of "infuriated PANDAS parent") so I think it would be a mistake to leave the out of the picture.

[MomWithOCDSon]

Also, on the Saving Sammy webite, a poster mentioned this contact at Children's:

 

RE: The Wray Family...Dr Claire McCarthy is a primary care physician and the Medical Communications Editor at Boston Children’s Hospital. She has been named one of the Top Ten Online Influencers because of her very visible blogs on children's health. I have written to her in the past hoping that she would spread awareness of PANDAS. Her response was that she has never personally dealt with a PANDAS case. Perhaps she will get involved now.

 

You can email her at claire.mccarthymd@childrens.harvard.edu, or follow her on Twitter @drClaire.

 

Okay, I've just sent Dr. McCarthy an email as follows:

 

Dr. McCarthy –

 

I understand you serve as Medical Communications Editor at Boston Children’s Hospital (BCH). I am compelled to write to you because of the situation which has manifested at your institution regarding Elizabeth Wray and her family. I’m certain that by now you’ve been made aware of this case so I won’t go into detail, but this is an appalling situation and does not well represent a medical facility dedicated to the health and wellbeing of children and their families.

 

Dr. McCarthy, my son has PANDAS/PANS. But because of the ignorance and obstinence of my local medical community, he suffered from the condition for more than 6 years without receiving a proper diagnosis or treatment. I don’t know whether to credit that same community’s complacency or over-burdened conditions with the fact that my husband and I were not reported to Child Protective Services or had our son removed from our custody as we fought to get him effective help, but I’m grateful that he was never subjected to a hospital psych ward or forced to endure a harrowing hospitalization experience without me or his dad by his side. Finally, thanks to my family’s resiliency and determination, we WERE able to get a proper diagnosis and treatment, and, as a result, my once horribly ill and dysfunctional son is now happy, healthy and fully functional.

 

Unfortunately, due to ignorance, impatience or inappropriate prejudice, or perhaps a combination of all three, on the part of some members of BCH’s staff, Elizabeth Wray is very likely headed down the wrong road with respect to treatment. But more importantly, she has been forcibly, even if only temporarily, severed from those whom she needs the most right now: her parents. This is a travesty of the hospital’s responsibility and role, and the situation needs to be reversed immediately.

 

Furthermore, I urge you to seek out the latest, greatest information regarding PANDAS/PANS and to help drive BCH toward education of its staff and professionals regarding this condition. The National Institute of Mental Health, Columbia University Mailer School of Health, Massachusetts General (Dr. Dan Geller), Harvard Medical School (Dr. Michael Jenike), and the International Obsessive Compulsive Disorder Foundation (IOCDF) are only a few of the prominent institutions which have come to not merely recognize PANDAS/PANS, but to treat it, research it and advocate for patients and their families.

 

Please, please, please do not let this situation go unattended. Our local pediatrician, who eventually helped us despite having a healthy skepticism herself, ultimately told me that she felt that her oath to “do no harm” took precedence over her own ignorance and skepticism regarding this condition. Taking Elizabeth Wray away from her family and dismissing the family’s recorded medical history regarding PANDAS/PANS and medical treatments/interventions effective in its treatment is counter to that oath; it is, in fact, doing Elizabeth harm.

 

Thank you for your time.

[kos_mom]

Nancy,

 

Here's my email to her:

 

"I would like to make known to you the consternation of PANDAS families everywhere, including my own, over the treatment Elizabeth Wray has received at Boston's Children's Hospital. PANDAS is a devastating illness that wreaks havoc on families and robs children of their childhoods if not treated appropriately. The standard of care as developed by the NIMH is well known to be antibiotics given over a much longer time than is conventional for nonPANDAS strep patients. It is most regrettable that the parents of this child were told repeatedly by medical personnel at BCH that PANDAS does not exist and that Elizabeth had her antibiotic therapy withdrawn. It is staggering that BCH has turned over Elizabeth to Child Protective Services because her parents were pursuing evidence-based treatment for Elizabeth's PANDAS while seeking help for her eating issues at BCH.

 

In your role in medical communications for BCH I hope you will do all that you can to make this situation right and to educate hospital personnel on this disorder so there will be no more Elizabeth Wray stories, at least at BCH."

 

Here's my email to the talk radio station:

 

"I would like to alert you to a brewing controversy at Boston Children's Hospital that I believe will be of interest to your listeners. The parents of Elizabeth Wray brought her to Children's to seek help for eating issues their daughter was having in connection with a rare autoimmune disorder known as PANDAS--Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. This disorder has been extensively studied by the National Institute of Mental Health and the standard treatment protocol is long-term antibiotics, plus other medical treatments where this treatment is insufficient. Children suffering from this disorder develop sudden onset OCD and/or tics following a strep infection (and sometimes from other infections) that can be very debilitating. he condition is often accompanied by emotional lability, anorexia (often brought by fear of choking or vomiting), separation anxiety, bedwetting, hallucinations etc. Given he sudden overnight change experienced by these children, who can become very incapacitated, families are often plunged into chaos and disarray.

 

At BCH, the parents were told repeatedly that PANDAS does not exist despite her diagnosis by two specialist neurologists, Elizabeth was taken off her antibiotics, and the hospital threatened to turn the child over to Child Protective Services unless the parents agreed to put their child in a locked psychiatric facility. Their lawyer, Beth Maloney, went to court yesterday to fight the hospital, but Elizabeth was nonetheless put under the care of CPS. Given how critical antibiotics are to the treatment of PANDAS children and the overwhelming separation anxiety many suffer, this was perhaps the worst possible outcome for the child.

 

Here are links to the Facebook pages of Beth Maloney and Boston Children's Hospital where many have posted on this matter:

 

http://www.facebook.com/pages/Saving-Sammy-Curing-the-Boy-Who-Caught-OCD/104887432702?fref=ts

 

http://www.facebook.com/BostonChildrensHospital?fref=ts

 

Some basic authoritative information on PANDAS is available on the International OCD Foundation website:

 

http://www.ocfoundation.org/pandas/

 

This article is co-authored by Dr. Michael Jenike of Massachusetts General Hospital.

 

I do hope you consider including this story in one of your shows: like many families with PANDAS children such as my own, the Wray family has been twice victimized, first by this devastating illness and second by mistreatment of medical personnel who are willfully ignorant of this condition."

 

 

For good measure, I also followed your lead in emailing the two TV stations.

 

I'd post on Facebook too, but I've never done that before.

 

Ko's Mom

[Hopeny]

This is appaling and so scary. Since Elizabeth is already in the state's care, and out of BCH hands, I am thinking for example the Mass govenor, Boston Mayor, congress people, senators and the president the right people to email/call/tweet? I am not good with twitter but it would be good to tweet these folks. That seems to get a good respons. Ironically I read a PANDAS story on BCH's own blog!!!

[kos_mom]

I am assuming that she is in the hands of CPS and they are doing the hospital's bidding so she is in a locked psych ward, not with a foster family.

 

I just noticed that EA posted the email address of BCH's public affairs office. Here is the email I am sending them:

 

"I am sure you are aware of the controversy Boston's Children's Hospital has set off in the PANDAS family community owing to its treatment of Elizabeth Wray. Our community may not be large--PANDAS after all is a rare disease (a term not interchangeable with a nonexistent disease, which appears to be the view of many medical personnel at BCH)--but it is very supportive and passionate. Our passion is borne of the havoc this devastating disease has wreaked upon our families as we watch our children be robbed of their childhoods because so often doctors refuse to take even the simplest steps to treat them. The story sadly is monotonously the same for almost every family struck by this disease.

 

What the vast majority of us have not had to deal with, however, is having a hospital tear our children away from us because we, after enormous research efforts we have had to conduct almost entirely on our own, are pursuing evidence-based treatment for them that willfully ignorant doctors refuse to provide. After everything we have been through, we cannot imagine further having to deal on top of that with the kind of nightmare your hospital has visited upon Elizabeth Wray's family.

 

It is time for your hospital to revise your sadly out of date notions on PANDAS. It is time for your hospital to admit it erred in referring Elizabeth's Wray's family to Child Protective Services. It is time for your hospital to apologize not just to her family, but to all the family's who have come to you with PANDAS children whom you refused to treat because you do not "believe" in PANDAS despite copious NIMH studies. It is time for your hospital to issue a statement acknowledging the truly devastating nature of this disease and your immediate plans to work to alleviate the suffering of its young victims using long established antibiotic regimes supplemented by IVIG where needed and to battle the ignorance surrounding this disease.

 

If you cannot do any of these things, it is time for your hospital to amend its motto, "Until every child is well" to add, "unless the child has PANDAS, which we don't believe in and refuse to treat.".

 

Please work to make this situation right. Please free Elizabeth Wray."

 

 

Ko's Mom