I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Wednesday
Oct032012

Boston Children's Hospital Pulls the Rug Out from PANDAS Parents

"Do not take a child with PANDAS to Boston Children's Hospital," writes Beth Maloney, PANDAS activist, attorney and author of Saving Sammy, The Boy Who Caught OCD.

"I am working with a family whose PANDAS child was admitted to BCH due to eating issues. This is the second family I have represented within two months regarding BCH with the same fact pattern. In both cases, BCH has immediately told the parents that PANDAS/PANS does not exist, cut off the child's antibiotics, reported the parentsto Mass child protective services, and had the parents trailed by guards at the hospital. In both cases, BCH has actively encouraged children's services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit. I will be in court tomorrow in Boston fighting Mass CPS on behalf of the current family who is trying to retain custody of their child.

"FIND A DIFFERENT HOSPITAL."

--------

OMG! I cannot even begin to describe the grief that I feel for this family.

And it merges with the grief I feel for my own family. Life at home, right now, is dreadful. My son is herxing like crazy and that's not an exaggeration. We need to make it through the herx, to the other side. Herxing means the antibiotics are working on the Lyme. We have been decreasing the amount of antibiotics because this little kid doesn't want to live like this anymore. He doesn't want to live.

His younger sister told me that she doesn't want to argue with him in case he's not alive one day. Stab me in the heart. (But then she goes on to argue with him anyway, so maybe she has more faith, or just not much patience. I opt for the latter.)

Heavy stuff for an 11 year old and for his 9 year old sister, who's been sobbing and hyperventilating. And for my husband. And for me. 

The dog is still wagging his tail and dumping toys in our laps.

So, what do I do, take my son to a hospital? Sure thing, the one down the street believes in PANDAS and chronic Lyme. NOT! Westchester Medical Center? Just the opposite. I won't even go into all the details here and now, because I'm wiped out but WMC is under the governorship of infectious disease doctors who tried to create a Lyme vaccine and have sat on research showing that Lyme DOES in fact travel from a pregnant woman to her unborn fetus while claiming that this cannot happen. Look it up--it's all there on the internet. And of course, we had brought my son there in the beginning and did they ever test for PANDAS? No. In fact, they sent us on to a psychiatric hospital.

Hello, people! PANDAS is a medical disease, not a psychiatric one!

So, if I take my son to Boston Chidren's Hospital or a dozen others around the country, chances are that they will take him off antibiotics, call CPS and take my child away from me, maybe put him on psychiatric meds that will exacerbate his PANDAS symptoms. This is a nightmare. 

When he broke his arm, I told the ER nurse (at a different hospital) that he had Lyme and PANDAS. I was lucky, because her husband has chronic Lyme so we immediately had an understanding. But what if she were one of these nonbelievers who would report me for giving him medication for a disease that she said didn't exist? And I told her he has PANS and was able to educate her about PANS. No, she'd never heard of it before. What? How can that be? Shouldn't our ER people all be taught about diseases that are recognized by NIH?

We have been to three top doctors who diagnosed my son with PANS and/or PANDAS. But that might not matter if we stumble into the wrong hospital with the wrong doctors. As it was, my baby was misdiagnosed for a long time.

And now, he's anguishing. He screamed out, "HELP! I just want to be CURED!" But what if some neighbor heard the cry for help and called the police when my son is in this state? What if they wanted to take him away and out of desperation, he fought them? It's happened before to PANDAS kids. And separation anxiety is a hallmark of PANDAS. Tics. OCD. Intrusive thoughts. Nightmares. Depression. Oh, what a fun, lovely disease.

He will be better one day. A friend told me that herxing like this is like (her words) "free falling" on a roller coaster, trusting that we will come up on the other side. Actually, she said it much more eloquently than I just summarized. But I'm operating on 3 hours of sleep and a ton of anguish.

Just remember this: no one takes my son away from me.

Or, do I really have the power to say that? 

What can you do? What I did. Write to Boston Children's Hospital and let them hear your outrage. Just email your letter to public.affairs@childrens.harvard.edu .

---------

Addendum: This just in from Beth Maloney:  

"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 first.last@childrens.harvard.edu   
 
Here are the specific people I was told that the State spoke with: 
Dr. Othman Mohammad
Dr. Simona Bigourno
Dr. Gary Gosselin gary.gosselin@childrens.harvard.edu 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      Ellen.Rothstein@childrens.harvard.edu
 
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"

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Reader Comments (1)

I had the EXACT same experience at WMC this summer -- awful awful awful awful. DD is 9 and has PANS - lyme and mycoplasma. Feel free to email me - bleveans@aol.com

October 5, 2012 | Unregistered Commenterannie's mom

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