Warning for those in Boston

[EAMom]

I received Beth Maloney's permission to post this word for word. Hoping it will save someone additional heartache.

 

"Do not take a child with PANDAS to Boston Children's Hospital.

 

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 parents to 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.

 

Beth

 

 

Hi Everyone...(I'll also post this as a separate thread)

 

Some people in the PANDAS community are working to help this family out. Yeah!! This is from one of the mom's (who would post herself, but is pretty swamped) who is trying to get a reporter involved.

 

"Anyone that has had an experience with Boston children's -/ please send me your story , be sure to include ALL doctors names and how they treated you. If you want to remain anonymous let me know....Boston families that were seen at BCH is most important BUT I want the reporter to have even more families that are willing to share their story. Don't know what the reporter is going to want."

 

 

Please PM me and I will give you this mom's contact info. Or...you can just PM me your story/contact info and I can forward it for you. PS other things to include: name address, tel,email and whether your child was seen at BCH,thanks!

Edited October 3, 2012 by EAMom

[kos_mom]

EAMon,

 

The reporters will want to focus on BCH for the local hook. And BCH rihtly should take a lot of heat for this. But should the story spread, a journalist might want to see if this is isolated to BCH or part of a broader pattern. If you or anyone learns a reporter is interested in the broader story, let us know--there are at least as many stories of mistreatment at medical hands as there are posters on this board!

 

Ko's Mom

[3boysmom]

This makes me want to get on a plane and protest those dumb %*@!.... With picket signs!!

[ptcgirl]

Thenmama, I am thinking the same thing. This disorder is supported by our own government through NIMH. This doesn't make any sense. I could understand if this was something different. I understand some doctors being skeptical, but to remove a child.... This isn't right. I'm pretty scared and want to find out more info.

[pr40]

we did not have as bad of an experience as the one described. At BCH we were treated by doctors, one neurologist and one psychiatrist, who were willfully ignorant. Neurologist's advised us to sit tight and wait. It will pass. Psychiatrists offered Prozak -- while we wait, I guess. Nine months later nothing changed for the better. Things got only worse. I would go so far as to call this denial of service and would wish for a lawyer to get involved, not only a reporter. There were many reporters after the publication of Sammy's story and not much have changed at BCH.

Knowledge is out there and they are responsible to acquire it. They can have doubts (and we want them to have doubts since that would keep them searching to understand Pandas/Pans better), but they should not deny treatment.

[cobbiemommy]

Have to agree with SoSudden. Do not take a child to Children's Mercy in Kansas City, MO. The doctor ignored my son's symptoms of pain in his legs and crushing fatigue. She kept trying to get us to take him to a psych or get him social skills. A short time later he was found by Dr. B to have a sky high white blood cell count and intracellular strep as well as still having Bartonella. Run, don't walk, from this hospital for PANDAs.

 

Cobbie

[Sheila]

Just a note to remind people to please share specific physician's names, particlarly when finding fault with their service or approach, thorugh PMs. Its important information to share, we just want to stick with forum policy on this. Thanks, everyone.

[socalmom]

This poor family, this is criminal, I can't imagine what they must be going through.

 

We need to speak up , this could be YOU one day. I have had a similar experience at CHLA with head Neurologist.

 

I owe a lot to the mothers on here who shared info and told me to be aware of how prevalent lyme can be with PANS kids.

 

My son has both.

[mama2alex]

Here's a link to the BCH Facebook page someone else mentioned: http://www.facebook.com/search/results.php?q=BCH&init=quick&tas=0.6435825145516316#!/BostonChildrensHospital?fref=ts

 

This is a good way to tell them what you think in a very public way. It's already starting to blow up...

[rowingmom]

Have to agree with SoSudden. Do not take a child to Children's Mercy in Kansas City, MO. The doctor ignored my son's symptoms of pain in his legs and crushing fatigue. She kept trying to get us to take him to a psych or get him social skills. A short time later he was found by Dr. B to have a sky high white blood cell count and intracellular strep as well as still having Bartonella. Run, don't walk, from this hospital for PANDAs.

 

Cobbie

We got the same runaround from our family doctor (Niagara Ontario area) about DD11's motor/vocal tics, shin pain, cyclical IBS and fatigue. He put it all down to her not wanting to go to school and rx'ed ritalin and anti-seizure meds. Things are no better in Ontario, Canada. I am so frightened of what will happen if I have to take DD to a hospital and I tell them she is on long-term combination abx treatment.

[WonderWhy]

Unbelievable. As if the child is not suffering enough already!

[philamom]

I'm pulling up this thread from a year ago - it seems this hospital is still taking children away from their families, and not even open to the suggestion of Pandas/Pans/Mitochondria disorder. Beth Maloney recently released a link of Glenn Beck on the Blaze discussing the situation. Another child (age 15) was taken away from their parents and the hospital is trying to keep the child in the states custody until at least age 18. Horrendous!

 

I'm not too tech savy. Can someone post the link to the interview? thx

[rowingmom]

http://www.theblaze.com/stories/2013/11/25/hospital-holding-teen-against-parents-will-accused-of-having-a-history/

[philamom]

Thank you.

 

I suggest everyone watch the complimentary clip from the Blaze TV at the bottom of the link. It's about 8 minutes.

[nicklemama]

I suggest everyone be very careful in deciding a hospital to admit your child to. Beth Maloney recommends only taking your child to a hospital your doctor has privileges in. Scary.