Boston-bound for Elizabeth

I know many people who've heard about Elizabeth Wray are holding off making a judgement about Boston Children's Hospital, thinking that if the hospital took her away from her parents, that they must have a valid reason.

Most people believe that a large, top-rated institution would never make such an erroneous decision.

There must be more to the story than suggested. 

Yes, there is.

On Saturday, my son and I drove from NY to Boston to join the rally for PANDAS and for Elizabeth Wray. We gathered with other supporters on the sidewalk across the street from Boston Children's Hospital. We met "Grandpa" Jeff as well as parents and children who have or had PANDAS and Lyme. We handed out information about PANDAS as well as information about Elizabeth Wray's sad journey in an effort to educate families and medical professionals. 

From personal experience, I've learned that most medical professionals know nothing about PANDAS or PANS and those who know a little are just as "dangerous" because after giving one week of antibiotics without results, they think that PANDAS is not the problem. So, perhaps we educated more medical professionals: those employed by Boston Children's Hospital. 

But why, oh why, would BCH not believe in PANDAS????? This child has PANS and Lyme Disease. Antibiotics, gluten-free and casein-free diets are typical treatments. Why would BCH remove her from the treatment which had, until recently, been working?

Well, for one, the U.S. government hasn't updated its definition of Lyme Disease for years now;  it still maintains that Lyme is expelled from the system with a thirty day dose of antibiotics. The CDC refers people to the 2006 Guidelines for treatment as developed by the Infectious Diseases Society of America. And the IDSA doesn't support chronic Lyme. If long-term antibiotic use is not sanctioned for Lyme, then why would it be sanctioned for PANDAS? 

Yes, there are Dr. Swedo's studies, and more...friends of mine are much more adept at citing studies (see PANDAS Resource Network for these links.) Yes, PANDAS is recognized by the National Institute of Health. But in reality, few hospitals recognize PANDAS. Sure, it exists, they say, but it's overdiagnosed, they also state. 

Which is perhaps what BCH is saying? They certainly don't want to support the diagnoses made by her previous doctors, doctors who are well-respected in our small PANS community. For some reason, BCH wants to treat Elizabeth's problems as psychiatric. They would have put her in a psychiatric ward were it not for the judge. But this same judge took custody away from Elizabeth's parents who were seeking help for her. Are you telling me that the hospital called CPS because the parents would not consent to the psychotropic medications? Really? Have we, as parents, lost all our rights?

The Wray's case is not a stand-alone incident. However, thanks to her family wanting to go public with this trauma, some of us know about it. There have been blogs about this. One newspaper article. And nothing more. Why hasn't the media picked up this news? Are they afraid of going against the #1 rated children's hospital in the country? Is studying the science behind PANDAS too difficult? I admit, I have to read scientific documents many times. Now I know how antibodies attack the basal ganglia. And how spirochetes can even hide within yeast cells. How activated charcoal is given to bind the toxins in the body. But once, all this was a foreign language to me. As it must be for many a journalist.

No, it's not a stand-alone case. Each week, I read about parents taking their child to different doctors, different hospitals, even those that now call themselves, "PANDAS clinics," only to be told they need psychiatric meds, or to overhear doctors saying they don't really believe in PANDAS. I have met wonderful doctors who tell me that they don't believe in chronic Lyme. There must be something else wrong with our children. And parents are threatened with CPS constantly--by schools, by doctors, by hospitals--for not complying with medication. Just today, I spoke with a fantastic mom who is in the psychiatric healthcare field who was threatened with CPS when she refused to give her son some medication (not a PANDAS child--this is happening all over.)

Either way, Elizabeth is NOT being treated as if she has PANDAS OCD-induced anorexia. From what I gathered from Grandpa Jeff, Elizabeth is no longer walking. Her parents sit with her 24 hours a day in an effort to keep more of Elizabeth's daily functions from being lost to the OCD which the hospital is not treating properly. And her parents are sensitive to the intense separation anxiety suffered by our children who have PANDAS.

Gee. My child can't even fall asleep unless I'm by his side. And we once thought about taking him to BCH, long before we figured out he has PANS and Lyme. What might they have done to him?

The hospital decided that Elizabeth doesn't need to be on the gluten-free, casein-free diet her PANS and Lyme doctors suggested. They decided that she need not drink rice milk anymore and instead gave her regular milk; now, she won't drink either. It seems as though the staff is treating her not-walking as a behavioral issue. Or psychiatric. Take your pick. 

PANS and food. Texture, smell, taste, sound--it all comes in to play. My son cannot bear the scrape of a fork against a plate. He will only use plastic utensils. You make him eat with metal and he just won't eat. You try to make him eat a food that he no longer likes and he will leave the table. Half the time, he can't even sit at the table anyway. When I give him his melaton at night, he has to ask if it's "mint." Every darn time. If there are three separate pills, the question is, "Mint? Mint? Mint." G-d forbid I say "cauliflower."

OCD. What can I tell you? It's a different world, but this is not a world of mental disease. For some reason, doctors have gotten so far from treating for medical diseases. It's like they want to treat the medical disease as a psychiatric one. Throw some psychotropic drugs at the child. Unfortunately, these same drugs can result in a chlld with PANDAS or PANS becoming worse.

Doctors who are courageous enough to treat Lyme Disease and PANDAS have been harassed, investigated, and charged with mistreatment. By whom? Not by patients, but by other doctors, the Departments of Health, or in Dr. Jones' case, an angered ex-husband of a woman who brought her children to him.  Parents have been accused of everything from Munchausen's by proxy to sexual abuse. I guess our family got off lucky when we were accused of perhaps being too close.

Doctors who are tenacious enought to treat Lyme Disease and PANS must be creative. Every child is different. There is no one cure. We believe my son might have bartonella and babesia, tick-borne diseases, in addition to Lyme and PANS. We can't tell. His immune system is ruined by the Lyme and he doesn't test positive for too many diseases. We were lucky that he had the positive Lyme test (but not by CDC standards which claim you need many more strands.) We are lucky to find doctors willing to work with a boy who is not going to heal with a snap of the fingers.

Elizabeth Wray was lucky also. According to her grandfather, she plays guitar and at least one other instrument, rides a horse, is artistic. She's a bright-eyed, beautiful girl. When she got sick, her parents found the right doctors. She certainly has the best family a girl in her position could ask for. She would have been lucky if she had gone straight to Mass General, where Dr. Jenike and Dr. Geller could treat her. But this time, her luck ran out. 

Grandpa Jeff believes that if this ordeal changes the way all children with PANS and Lyme are treated, then there is something to be gained from it. 

My son talked about breaking in to Elizabeth's hospital room through the window and saving her, Spiderman-style. 

We cannot lose our momentum. The case goes before the judge again on October 23. Sign those petitions, contact the congresspeople and the news, get word out that an atrocity is happening. Save this child.

Want to follow the news? Like the Free Elizabeth FB site. For the petition, click here.

For a video from the Oct. 13 rally, see PANSlife on FB.