I stumbled upon an interesting story about a young girl by the name of Justine Pelletier.
The long gist of the story goes, Justine had several very odd GI tract issues, poor energy during the day, and learning disabilities. Her parents had her enrolled in a special needs school which helped take care of her learning issues, but her GI tract and poor energy issues worsened.
They took her to Tufts Medical in Boston and a team of doctors diagnosed her with a rare mitochondrial disorder where her cells don't make enough energy. This was a specialist team who looked into mitochondrial disorders specifically.
The kicker of the story is, Justine's older sister was also diagnosed with the very same disorder after a litany of tests were done (including a muscle biopsy).
The treatment includes a feeding tube for nutrients, a cecostomy (a hole to allow irrigants to flush out items in the colon), and a collection of drugs to help her digestive tract do its job.
One night back in 2013, Justine's conditioned worsened to the point where so was completely bed ridden. Her parents drove her from Connecticut up to Boston. Since it was late at night her parents opted to go to Boston Children's Medical Center instead of Tufts Medical.
Woe to her family because at this point things began to get worse.
Instead of a gastroenterologist, a dutch nuerobiolgist decided that this girl was not experiencing any GI tract issues but instead was suffering from a somatization disorder (ie making it up). It was noted by the dutch neurobiologist that the girl's condition worsened around her mother.
The neurobiologist then calls in a psychologist to make an evaluation. The shrink agrees and then they decide to end all of Justine's medical procedures and focus on psychiatric evaluations. More so called "elite" medical professionals from interns, doctors, postdocs, nurses, etc came in to examine this girl. They all agreed with the original somatization disorder from the neurobiologist.
This was all done without the consent of the parents and the original doctors who made the first diagnosis.
Livid, Justine's parents demanded an explanation. Instead of getting one, Boston Children's Hospital decided to file a "Medical Abuse" claim against the parents which allowed Child Protection Services to take control of the child. In doing so, Boston Children's moved the girl to a locked wing of the hospital meant for children experiencing severe mental disorders. Justine was essentially bed and wheel chair ridden the entire time.
The state eventually declared that Justine's parents were unfit for them to visit her and that all visitations would be guarded by a "visitation specialist". To make matters even more dastardly, Boston Children's refused to let the original diagnosing doctor and team look at Justine.
Now reading into both sides of the story, it came out that Justine's parents are quintessential helicopter parents. In Justine's medical charts, it came out that her parents had argued with several doctors. Justine's original primary care physician accused them of doctor shopping and just being outright difficult.
Normally, I would take such information at face value and agree that maybe her parents were being difficult because they're being idiots.
However, Justine's parents had another daughter who also suffered from the very same issues. She was diagnosed by the same doctors and had a handful of tests done to diagnose the rare mitochondrial disorder up to and including a muscle biopsy. The disorder is considered genetic.
Hilariously, after pulling the girl off of her drugs her conditioned supposedly worsened and they eventually had to put a feeding tube back in her to get her nutrients she needed.
At this point knowing the type of people who occupy positions of power in these "elite" medical institutions around Boston made me side with the parents.
This type of arrogance about the state knowing what is best for children with rare medical disorders sickened me and the complacency of CPS to come in because of Boston Children's connections with Harvard is disgusting.
While I can contend that smart folks go to these elite institutions, the level of arrogance assuming that they know what's best and using state apparati to dictate their whims is the height of totalitarianism.
Justine's parents are now suing Boston Medical for its handling of their daughter's issue.
The Boston Globe had an excellent story on what happened and can be viewed here:
https://www.bostonglobe.com/metro/2013/1...story.html
TL;DR: Girl with rare medical disorder was taken from her parents at the behest of "elite medical experts" who assumed that they knew best when in fact they didn't.
Moral of the story: don't take your kid to a children's hospital and especially don't go to a different hospital from where the primary treatments are taking place!
The long gist of the story goes, Justine had several very odd GI tract issues, poor energy during the day, and learning disabilities. Her parents had her enrolled in a special needs school which helped take care of her learning issues, but her GI tract and poor energy issues worsened.
They took her to Tufts Medical in Boston and a team of doctors diagnosed her with a rare mitochondrial disorder where her cells don't make enough energy. This was a specialist team who looked into mitochondrial disorders specifically.
The kicker of the story is, Justine's older sister was also diagnosed with the very same disorder after a litany of tests were done (including a muscle biopsy).
The treatment includes a feeding tube for nutrients, a cecostomy (a hole to allow irrigants to flush out items in the colon), and a collection of drugs to help her digestive tract do its job.
One night back in 2013, Justine's conditioned worsened to the point where so was completely bed ridden. Her parents drove her from Connecticut up to Boston. Since it was late at night her parents opted to go to Boston Children's Medical Center instead of Tufts Medical.
Woe to her family because at this point things began to get worse.
Instead of a gastroenterologist, a dutch nuerobiolgist decided that this girl was not experiencing any GI tract issues but instead was suffering from a somatization disorder (ie making it up). It was noted by the dutch neurobiologist that the girl's condition worsened around her mother.
The neurobiologist then calls in a psychologist to make an evaluation. The shrink agrees and then they decide to end all of Justine's medical procedures and focus on psychiatric evaluations. More so called "elite" medical professionals from interns, doctors, postdocs, nurses, etc came in to examine this girl. They all agreed with the original somatization disorder from the neurobiologist.
This was all done without the consent of the parents and the original doctors who made the first diagnosis.
Livid, Justine's parents demanded an explanation. Instead of getting one, Boston Children's Hospital decided to file a "Medical Abuse" claim against the parents which allowed Child Protection Services to take control of the child. In doing so, Boston Children's moved the girl to a locked wing of the hospital meant for children experiencing severe mental disorders. Justine was essentially bed and wheel chair ridden the entire time.
The state eventually declared that Justine's parents were unfit for them to visit her and that all visitations would be guarded by a "visitation specialist". To make matters even more dastardly, Boston Children's refused to let the original diagnosing doctor and team look at Justine.
Now reading into both sides of the story, it came out that Justine's parents are quintessential helicopter parents. In Justine's medical charts, it came out that her parents had argued with several doctors. Justine's original primary care physician accused them of doctor shopping and just being outright difficult.
Normally, I would take such information at face value and agree that maybe her parents were being difficult because they're being idiots.
However, Justine's parents had another daughter who also suffered from the very same issues. She was diagnosed by the same doctors and had a handful of tests done to diagnose the rare mitochondrial disorder up to and including a muscle biopsy. The disorder is considered genetic.
Hilariously, after pulling the girl off of her drugs her conditioned supposedly worsened and they eventually had to put a feeding tube back in her to get her nutrients she needed.
At this point knowing the type of people who occupy positions of power in these "elite" medical institutions around Boston made me side with the parents.
This type of arrogance about the state knowing what is best for children with rare medical disorders sickened me and the complacency of CPS to come in because of Boston Children's connections with Harvard is disgusting.
While I can contend that smart folks go to these elite institutions, the level of arrogance assuming that they know what's best and using state apparati to dictate their whims is the height of totalitarianism.
Justine's parents are now suing Boston Medical for its handling of their daughter's issue.
The Boston Globe had an excellent story on what happened and can be viewed here:
https://www.bostonglobe.com/metro/2013/1...story.html
TL;DR: Girl with rare medical disorder was taken from her parents at the behest of "elite medical experts" who assumed that they knew best when in fact they didn't.
Moral of the story: don't take your kid to a children's hospital and especially don't go to a different hospital from where the primary treatments are taking place!
