Warning for those in Boston

[mama2alex]

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

[1tiredmama]

WOW!!! I'm speechless. That's shocking!

[EmilyK]

Oh we ran from Children's - thank goodness we're not Mass residents. We will not go back. Couldn't one get them on malpractice given that they took the - "keep doing what you're doing and see how he is in 6 months" approach? For a child who had a multitude of symptoms and was still sick despite the treatments we were doing? I've never had a dr and staff piss me off as bad as that one. 60 days to get strep titer results and I believe I only got them because the on call doctor taking messages actually called me back and gave me them over the phone. They never did mail them as promised and neither GP nor Dr. B has received written copy. I'm so sorry for those parents going to court but I'm not shocked.

[tpotter]

Couldn't one get them on malpractice given that they took the - "keep doing what you're doing and see how he is in 6 months" approach? For a child who had a multitude of symptoms and was still sick despite the treatments we were doing?

 

 

After the experience we had at CHOP, I also warn people to stay away from them, as well...denied PANDAS, told us it was "voodoo", and then dx my son who had severe neurological flareup with conversion disorder (after already dx by 5 other docs with PANDAS and/or lyme and/or post-infectious encephalitis. I would warn parents to stay away from CHOP, as well, because I wouldn't put it past them to pull something similar.

 

Also, I was thinking the same as you about the malpractice, but I was also thinking that it would be child endangerment by pulling a child off his/her abx, and also attempted intimidation, and who knows what else?

 

Very, very scary.

[DeterminedMomVA]

Interesting article on CHB that would be consistent with their close-mindedness with restpect to PANS/PANDAS. It sounds like their autism research agenda is not particularly innovative or useful (PANDAS is mentioned in this article):

 

http://www.ageofautism.com/2009/11/childrens-of-boston-plays-it-safe-with-autism-research.html

[Teri]

That is really shocking ..... And depressing.

[landamom]

This is so upsetting. Imagine trying to take a child away from their home because their parents want to get them help. And then what? They go into foster care with a family they don't know ... And this is going to be beneficial to the child's mental health??? Good Lord.

[kos_mom]

It sounds like BCH 's line of argument is that the parents have a child with an eating disorder whom they ae treating with abx rather than accepted treatment for anorexia and that constitutes some kind of child abuse. The last I looked, however, conventional treatments for eating orders have poor success rates--possibly because a good portion of them actually have untreated PANDAS/PANS. Dr K notes eating issues as being particularly indicative with adolescent onset PANDAS/PANS. The campaign to have pediatricians check for strep when children suddenly have tics, OCD, anxiety, should be clear that they should check for this in adolescents who suddenly develop eating issues.

Would be very interested in how the court hearing today goes--if someone hears, could you post it?

[mama2alex]

Would be very interested in how the court hearing today goes--if someone hears, could you post it?

 

Beth posted this warning on her Facebook page as well, and there are about 25 comments. Here's a link: http://www.facebook.com/#!/pages/Saving-Sammy-Curing-the-Boy-Who-Caught-OCD/104887432702?fref=ts

 

If the link doesn't work, go to Facebook and search on "Saving Sammy: Curing the Boy Who Caught OCD." I'm not sure if she can/will share details of the court hearing.

[EAMom]

Would be very interested in how the court hearing today goes--if someone hears, could you post it?

 

Beth posted this warning on her Facebook page as well, and there are about 25 comments. Here's a link: http://www.facebook.com/#!/pages/Saving-Sammy-Curing-the-Boy-Who-Caught-OCD/104887432702?fref=ts

 

If the link doesn't work, go to Facebook and search on "Saving Sammy: Curing the Boy Who Caught OCD." I'm not sure if she can/will share details of the court hearing.

 

Beth has another page here http://www.facebook.com/beth.maloney.94?ref=ts&fref=ts#!/pages/Beth-Alison-Maloney/233696275037?fref=ts

[Christianmom]

After the experience we had at CHOP, I also warn people to stay away from them, as well...denied PANDAS, told us it was "voodoo", and then dx my son who had severe neurological flareup with conversion disorder (after already dx by 5 other docs with PANDAS and/or lyme and/or post-infectious encephalitis. I would warn parents to stay away from CHOP, as well, because I wouldn't put it past them to pull something similar.

 

When I read this post about BCH, I had the same thought as you about CHOP. Our doctor was adamant that my son's problems were completely mental and in no way related to illness. She made me very feel very uncomfortable and guilty, as if I were a bad parent for not pursuing mental help for my son sooner. She said several times that I needed to get my son on a drug like Prozac as soon as possible. When I disagreed with her, she shut me down, wouldn't even listen. So I didn't continue fighting for fear of what she would do if she felt I wasn't going to do what she said. I just tried to get out of there as quickly as I could.

 

These children's hospitals seem to think they are the last-word authority. I had been sent there by Dr. T for plasmapheresis and she completely ignored his PANDAS diagnosis. Wouldn't even consider it as a possibility. Wouldn't even look at the bloodwork. Based her diagnosis completely on the fact that my son told her he had had OCDish behavior for years. When she heard that, she ruled out PANDAS because there was no "sudden-onset OCD," and that was that.

 

I was also uncomfortable with the amount of documentation that she required. She asked a lot of unnecessary questions. I just couldn't understand why she asked all the questions she did. It seemed well beyond what was necessary.

 

I fear these hospitals as well because of the links they have to pharmaceutical companies that sell psychotropic drugs like Prozac.For the name of the doctor please IM me.

Edited October 3, 2012 by Sheila Rogers

[kos_mom]

Same thing at JHU three years ago. We took our daughter, now 19, there because we thought there was a neurological component to her many bizarre issues that was perhaps related to her documented epilepsy. She had eptiliform discharges on a sleep deprived EEG run over an hour and a half. JHU pronounced themselves "unimpressed" with that EEG. On the basis of a 20 minute EEG they ran in the middle of the afternoon (completely inadequate for dx'ing epilepsy), they decided she did not have epilepsy and that her seizures and other issues were a result of conversion disorder.

 

It now seems the issues she was having at the time were PANDAS-related. (DD has just recently been formally dx'ed by Dr. T and Dr. L) I recently gathered up all of DD's medical records to follow up on Dr. L's comment back in June when DS saw her that DD could also have PANDAS and saw the JHU records for the first time. They ignored a high sed rate, as well as a comment from my daughter that she was concerned she had the same thing as her brother (PANDAS) because of her various OCDish behaviors. I sure wish they had at least communicated that to me--I didn't even begin to think about PANDAS for her issues until this year because her presentation is so different from her brother's much more classic presentation and she didn't tell me about the OCD behaviors.

 

Even a sixteen year old knows better than some of these doctors!

[sosudden]

Children's Mercy in KC, MO~~unimpressed there too. A bad experience there in July still keeps me up some nights!!! The Dr was just so rude and closed-minded!!! And lots of eye-rolling at my dd!!! Oooohh I was livid!!! The doctors that HELP us are truly gems!!!!

[thenmama]

Beth posted 15 minutes ago that the child was placed in the temp custody of the state of Mass this afternoon. This is terrible. I just can't fathom that they could get away with removing a child from her family because they were medically treating her for a disorder that has a division at the NIMH. If it were one of the things that didn't have any mainstream/Western med presence I could see how they could get away with it, whether or not I agreed... but this just makes no sense. I keep thinking there must be more to the story than this-- but maybe that's because I'm terrified for us all if there is not.

[Momto2boys]

I keep thinking there must be more to the story than this-- but maybe that's because I'm terrified for us all if there is not.

 

I feel exactly the same way. It is so scary to think about otherwise. I was intending to take my son there last month and thank goodness I got a bad feeling about it! I had been seeking out other options to help my son make some progress and all I got was to be transferred from one department to another and one doctor to another until finally I was given an appt. only to recieve a letter a month later saying the doctor was changed again. It sent me a clear message that none of the doctors at BCH seemed to want to treat a PANDAS child. I cancelled what should have been a Sept. appt.