I Have a 6 year olds son with SEVERE PANDAS,Lyme and b.duncani.
PANDAS is a cause very close to my heart. We have been through hell. The child in question, was already dx with PANDAS/PANS and cdc pos lyme. She is from a small town in NY and PANDAS can cause anorexia (my son included) and this child also has mycoplasma. Her local hospital advised that they take her to alarger hospital to help her weight and diarrhea. Her parents chose the "best" Boston Children's.
Little did they know they picked the worst PANDAS facility around. They are awful. They dont believe in PANDAS/PANS and wanted to put the child in a LOCKDOWN PSYCH ward. The parents said NO WAY. They were working on transeferring her and then they were handed papers to go tocourt the next day.
At court the next day, they lost custody. The child is in custody of the state and trapped in poor care at childrens (BCH)
I helped organize a protest that started yesterday. It was sucessful.
There is not more to the story as many I have tried to talk to about the situation told me.
The court appointed attorney is young and had the case for an hour before court started.
If that isnt BAD enough, due to outcry from the public, The judge issued a GAG ORDER on the parents and attorney!
So they cant even as for help.
They can't see their daughter and CHB are doing whatever they want with her (except they cant put her in the psych ward)
I have made a FB page to help get attention to this issue. This is the 2nd timein 2 months that BCH has done this to a PANDAS child.
If you go to BCH FB page, you will see the outcry from the public.
Please viit the Free Elizabeth Wray Facebook page
you can see what we have been up to.
Which is A LOT!
I feel like this could have happened to my family, as I did take my son to a neuro here who told me within 2 minutes of our appointmnet my son did not have PANDAS, and that I should "stay off the Internet"!!!!! 3 months later he was diagnosed by Dr. Swedo ( the doctor whodiscovered the disease)at the NIH!Classic clear cut PANDAS.
They have no idea what they are doing,
if you type PANDAS in the search a condition box..PANDAS is Nothing found!
There is also a petition on change.org, which would be good to sign. The hospital's facebook page might be more embarrassing because the public can read that.
[ 10-12-2012, 11:09 AM: Message edited by: poppy ]
Posted by merrygirl (Member # 12041) on :
Oh I didnt see it! I am GLAD someone beat me to it!!! XOXOX
Posted by poppy (Member # 5355) on :
It's very scary that they were able to take the child away from her parents.
Posted by merrygirl (Member # 12041) on :
This is the second time this hospital has done thisin 2 months to 2 different PANDAS families~
The protest was awesome BTW
Posted by Keebler (Member # 12673) on :
- I'm also appalled that she was forced by the hospital to drop the gluten-free, casein-free diet that had been helping. Her parents had no voice in that edict. -
Posted by merrygirl (Member # 12041) on :
Next court date 10/23. I have no updates as the parents are on a gag order.
Posted by map1131 (Member # 2022) on :
I can't believe they set this date so far out. You would think in this situation they would of scheduled asap.
My goodness we are talking about a child and parents and them losing rights??????? I just hope the doctors that were treating her will be able to voice their medical opinions vs this hospital.
Pam
Posted by lax mom (Member # 38743) on :
It's absolute abuse to drop the special diet. My little son was off it for the weekend and his little body went nuts...he was so uncomfortable.
Posted by seibertneurolyme (Member # 6416) on :
Any updates?
Bea Seibert
Posted by surprise (Member # 34987) on :
The next court hearing is October 23rd.
Posted by surprise (Member # 34987) on :
Sorry- guess it's after the 23rd! I haven't heard anything :-(
Posted by merrygirl (Member # 12041) on :
havent heard much. I assume the gag order is still in place which is BS
Posted by poppy (Member # 5355) on :
Well, if the hospital had released the girl after the latest court hearing, then we would have heard. So, they still have her.
Posted by merrygirl (Member # 12041) on :
No update she is still there. Gag orders prevent anyone from talking
Posted by beaches (Member # 38251) on :
Thx Merrygirl. I can't even imagine what her parents have been going through since this nightmare began. It's just so wrong, in so many ways.
Sending my prayers and hugs to the parents. Hoping and praying they just get their girl back.
Posted by poppy (Member # 5355) on :
What I am wondering is how they can force her parents to pay for the treatment since they have no say in it. This seems criminal to me. A hospital just grabs a patient and does whatever they want and expects to be paid regardless. Why are they any different than any other business? Imagine taking your car to the shop being told they want to do something expensive to your car that you don't agree with, and you are forced to pay!!!
Posted by lpkayak (Member # 5230) on :
I AM APPALLED AT THE WHOLE THING TOO AND JUST FEEL ...sorry...i guess i just feel so awful that there seems there is nothing that can be done.
the doc at nih cant write a letter or something?
as for the parents being forced to pay with no say i experienced this ina different way. when my daughter was in colllege and underage she went to a doc and had a surgery planned. no one called me...no permission...nothing. she was on my ins but she was allowed to sign every thing
we were not out and out fighting at the time but this was a girl born with lyme and not treated for 10 yrs then treated and told she was cured. i continued to see hints of lyme but she was rebelling against it and denying it. im sure she didnt want me involve in her surgery becasue i might bring up lyme.
the surgery was quite dangerous and she had a ruvv time so she did allow me to go take care of her for awhile.
it was tonsils-and as an adult they are hard . the doc said he never saw such a badly infected pair. i do believe it was lyme related but didnt dare say that. i was just glad to be near her.
but i never understood how with her being 17 she could set the whole thing up and i didnt know until after it happened-and even then no one asked me or had me sign anything.
who can we ask for help here??? im sure you have been doing that...but this is just so crazy. how did the other cases get resolved in the past? i know it wasnt pandas but lyme children have been taken away from parents before.
![[Frown]](frown.gif)
she is still there. Gag orders prevent anyone from talking