TOUCHED BY LYME: Let Justina go home with her parents—now!
The next step in the chilling story of Justina Pelletier is a court hearing in Boston on March 17.
Fifteen-year-old Justina Pelletier has not been diagnosed with Lyme disease. Nevertheless, what’s happening to her at Boston Children’s Hospital rightly strikes fear in the hearts of parents of children with Lyme disease, as well as other illnesses that don’t fit comfortably into a tidy diagnostic box.
Here’s the background:
Justina was diagnosed with mitochondrial disease by doctors at Tufts Medical Center and was under their care. She took medicine they prescribed and underwent surgeries and treatments for the illness. Then, in February 2013, she got very sick with the flu, and her family took her Boston Children’s Hospital. They thought the doctors would help them. Instead, things went horribly wrong.
Turns out, doctors at BCH didn’t agree with the diagnosis of mitochondrial disease, and decided her symptoms were in fact psychologically based, accusing Justina’s parents of medical child abuse.
Justina was put under the custody of the state of Massachusetts and kept in a psychiatric ward. Doctors cited Justina’s “regressive behavior” and “both parents’ resistance towards recommended treatment plans” as why they lost custody. After the Boston Globe reported the story, the judge imposed a gag order on Justina’s parents.
For the past year, Justina and her parents have only been allowed to see each other for one hour a week, under supervision.
Her father, Lou Pelletier, recently broke the gag order and spoke to the media, because he feels his daughter’s health is deteriorating so rapidly that she might die.
Though it doesn’t usually go this far, parents of children with Lyme disease are often viewed with suspicion by health authorities, medical personnel, school officials, and sometimes their neighbors and family members.
Sometimes their sick children are reported as truant. Sometimes the parents are reported to Child Protective Services. Parents of children with Lyme disease are often told by mainstream medicine that their kids’ health problems are psychologically based–and often the parents are blamed. And certainly, any of us who have taken our children to Lyme-literate doctors “resist” treatment plans put forth by Lyme-illiterate ones. So, by the standard applied in Justina’s case, any of us could find ourselves in the same kind of trouble.
The next step in Pelletiers’ legal process is a custody hearing on Monday, March 17, at 2 pm at the Suffolk County Courthouse in Boston. Supporters of Justina and her family will conduct a prayer vigil at 1 pm, on the steps of the courthouse.
More information at www.justiceforjustina.com.
I live at the other end of the country and cannot attend. If I could, I’d be there with bells on. I hope those of you who are in a position to do so will turn out to show support.
It’s not just the Pelletier family’s fight. It’s all of ours.
The following links have more information about Justina’s case:
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
This treatment of a family , is intolerable . For all the sancity of the family is being trampled upon .
Not to mention, the level of knowledge regarding Lyme and its associated illness.
Are too far ahead at this point . For boston hospital . To ignore.
This is Doctors playing with peoples lives . In a most egregious way .
Seems Justina , Like many of us are getting put in boxes . By the IDSA`s minoins
Earlier , i was mortified to discover, Through the lyme network .
That back in the 70`s , some using a FOIA Information . Had discovered that a
Search discovered That the US government had a Patent on the Lyme spirochete . Would consider this information and . And Justina`s case Grounds for a very big Lawsuite. If not a class action Suite .
Hang in there Justinas parents. Many hearts are with you .
Mitochrondrial disease and Lyme disease are not necessarily mutually exclusive. In other words, perhaps Justina’s mitochrondrial dysfunction could be the result of undiagnosed Lyme disease, especially considering that she lives near the epicenter for Lyme disease. Here are two links in support of this idea, the first being from a book review of Dr. Horowitz’es new book “Why Can’t I Get Better?” and the second link (and quote) by a mitochrondria medical expert from Cleveland Clinic:
https://lymedisease.org/news/lyme_disease_views/book-review-horowitz.html
http://my.clevelandclinic.org/multimedia/transcripts/parikh_understanding_mitochondrial_disorders.aspx — (Scroll down to sub-heading “Diagnosis of Mitochrondrial Disease)
“What we find too often is that when a patient has symptoms that a diagnosis has not been made for, mitochondrial disorders often get invoked as a diagnosis. We frequently see patients labeled with a mitochondrial disease diagnosis who in fact have something else, whether it be a genetic syndrome, or another medical issue like celiac or Lyme disease.”
This is my second comment but my lyme doesn’t allow me to deal with writing and technical skills much…….so my comments were lost. My prayers are with you like you can’t imagine. When I am stronger you will all hear more from me! Having long term severe lyme and its co infections for so long, my heart breaks for you all and I’ll be watching and hoping for some peace and help and understanding for you.
I am floored by the way this young girl and her family. They are going to cause psychological effects to this dear girl if she isn’t released soon and back with her parents (unless it’s too late). I’m a MFT in California. They better have some hard pressed FACTS to justify their decision on taking away their daughter to be instatutionized. I see a big lawsuit in the future. Only allowing her to see her parents for one hour a week is also very damaging to a teenage her age,
Is anyone with a teenager with Lyme also being treated? Just curios what your thought are about this.
This is a disgrace and hits close to home. I already singed petition. Our son..w a lyme history..had a bad apoendix a d gallbladder. After multiple hospitalizations they said it was constipation and anxiety. I knew they were dead wrong and proved them wrong as they didnt use the proper diagnostic tools. Thankfully he is great today. We coukd have lost him. He had severe pain for six months. We were crapped on by these two hospitals in n.c. still looking for a lawyer. I cant imagine the pain this fam is feeling. The medical society needs to get off their high horses for sure !!!
My story is just as bad –i live in sydney i have been gagged