Take care of Maya

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drg123

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www.netflix.com

Watch Take Care of Maya | Netflix Official Site

In this documentary, an anguished couple in Florida battles authorities for custody of their ailing daughter after being accused of child abuse.
www.netflix.com www.netflix.com
Popular documentary on Netflix right now focusing a case of a young girl with 'CRPS' who then goes on to be separated from her family by overzealous physicians and the state, resulting in the tragic suicide of the girl's mothers.

It's a tragic story that is unfolding still ‘Take Care of Maya’ Tackles a Thorny, Heartbreaking Medical Mystery

I'm curious what this audience here thinks. The documentary very early on takes as a given this diagnosis of CRPS and then focuses heavily on the excesses of the docs and state workers. The family becomes fixated on the diagnosis from the outset, leading them to conflict with the healthcare workers at a hospital.

I found the lack of details about the actual workup frustrating and the presentation seemed atypical for CRPS. One takeaway for me is the weight of diagnosic labels for patients and how that leads to unfortunate behaviors. Same goes for docs. Mental flexiblity and humility is needed. The heavy-handedness of the state apparatus is clear but if you put yourself in the position of the physicians who were dealing with the mom and daughter, you can see how this happened.
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Haven't seen it.

I do want to comment on your last paragraph though.

Agree with you - Diagnoses matter.

I find myself downplaying things when I talk with pts bc there's something to that IMO. I try not to use words like "severe" or "irreversible."

Not sure of any literature on this, but those words surely carry weight.
 
The general public does not understand the science, the methods, the standards of care, and the practice anywhere close enough to appreciate the nuance that you seek. Like many things in life I suspect we can dramatize anything we don’t know about much more than really happens. This happens a lot in politics, in wars, hospitals, corporations (the current myriad of business biopics and documdramas), sports, etc. and it is easier to sell it as some exciting intrigue and heartbreak than just some pencil pusher filling out the form and wanting to go home by 4 to be with his wife and kids. People think fibromyalgia, crps, etc. are just some tests and then you get the diagnosis and then you get the treatment. That’s it. And anything that seems like it deviates from is suspect because that is how it’s always been done for their strep throat or their skin cancer or whatever limited experience they have. It comes from ignorance and false sense of superior morality and then some producer gets their hand on some juicy script and drops a ton of money to sell this overly dramatized nonrealistic story. And no story is any good without a believable villain.

To be fair we on this forum do this a lot ourselves with insurances, governments, admin, etc. as if we know their jobs or their realities.
 
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Netflix really heavily skews this against the hospital, but I think the hospital was right. Maya definitely did not have CRPS. Idk if the mom had Munchausens by proxy or something else going on, but she was definitely not right. This Dr. Kirkpatrick guy is an absolute quack. “Come on down to Mexico where I’ll intubate you and run in a few gallons of ketamine over the course of a week”. Unfortunately the general public has no medical knowledge, as well as minimal common sense, so they believe the exact opposite of what seems to be the truth.
 
Maya acts like a lot of young adult patients I have who went through some kind of early PTSD. They demonstrate weird and otherwise medically unexplainable physical complaints with lots of emotional overlay going all the way back. This doesn't look like CRPS to me and I find the hubris in Dr. Kirkpatrick striking. Centralized hypersensitivity, maybe, but not CRPS.

I agree that the labels we use matter a lot. Labeling her with CRPS seemed to lock the whole family on a set of expectations that were incorrect.

The years-long recovery after the ketamine coma looks as much to me like psych effects as impact on pain.

The fact that mom committed suicide says most of what needs to be known about her. That's just bizarre. She professed a desire to protect her child, and yet she took an action that would guarantee her a lifetime of suffering.
 
I haven't watched the show, but I did just read up about the case. I have mixed feelings. On one hand, it superficially seems reasonable to assume munchausen's by proxy. A very nebulous diagnosis in a very unusual patient profile with unconventional treatments performed which was then followed by her mother's suicide all point to a mental health problem. In my opinion and experience, anyone who travels to Mexico for sketchy medical treatments is crazy by definition.

That being said, I've also had personal experience with CPS and can totally see how medical and government officials can and do destroy families because they don't fit an approved view.

Sad case either way.
 
I’ve had two teenagers with CRPS. Lots of psych overlay. One mom was downright hostile and I’ll have to admit I was relieved when they left for another opinion. The kid with the nice mom is almost completely recovered. The other has adopted CRPS as part of her identity and is doing the whole blog/influencer thing.
 
Agast said:
I’ve had two teenagers with CRPS. Lots of psych overlay. One mom was downright hostile and I’ll have to admit I was relieved when they left for another opinion. The kid with the nice mom is almost completely recovered. The other has adopted CRPS as part of her identity and is doing the whole blog/influencer thing.
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Surprised they didn’t change their name to allodynia
 
CPS have a tough and important job to do. Child abuse is rampant. I don't understand how CPS decisions are made, but the film makes it look like all the power was in the hands of one doc at JH who acts like a hammer looking for nails. That's just crazy.
 
This trial is now on-going. I don't know if any of you have been able to watch or read about the testimony so far, but I would be interested in what you think.
 
just adding my two-cents here. i think the family was victimized in so many ways by so many people. i can completely emphasize with chronic pain patients and also parents of children with mystery illnesses. i know i’m in the minority here but i don’t think going to mexico is that strange. i do think Dr. Kirkpatrick was completely out of line with 1) the creepy videos and 2) is emails to the mom about how Maya would die an excruciatingly painful death if left in that hospital.

i don’t know how anyone could watch the testimony of the nurses and drs at jhu and think they did nothing wrong. the smug expressions, blantant disrespect and lack of empathy and savior complexes. plus the insurance fraud!

the only thing that really confuses me is Mayas condition now (granted i don’t know much about this specific pain disorder) it seems like the family believed ketamine to be the only viable treatment option but it seems like her symptoms have cleared without it? (not sure if that’s true)

all and all i think jhu and dr kirkpatrick pushed a desperate for answers mother and made her feel like she was killing her daughter either way, the outcome is a horrendous tragedy. i’m so curious what everyone thinks we can learn from this case.
 
futuredocflo said:
just adding my two-cents here. i think the family was victimized in so many ways by so many people. i can completely emphasize with chronic pain patients and also parents of children with mystery illnesses. i know i’m in the minority here but i don’t think going to mexico is that strange. i do think Dr. Kirkpatrick was completely out of line with 1) the creepy videos and 2) is emails to the mom about how Maya would die an excruciatingly painful death if left in that hospital.

i don’t know how anyone could watch the testimony of the nurses and drs at jhu and think they did nothing wrong. the smug expressions, blantant disrespect and lack of empathy and savior complexes. plus the insurance fraud!

the only thing that really confuses me is Mayas condition now (granted i don’t know much about this specific pain disorder) it seems like the family believed ketamine to be the only viable treatment option but it seems like her symptoms have cleared without it? (not sure if that’s true)

all and all i think jhu and dr kirkpatrick pushed a desperate for answers mother and made her feel like she was killing her daughter either way, the outcome is a horrendous tragedy. i’m so curious what everyone thinks we can learn from this case.
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It’s confusing now that her mom is gone her symptoms have magically disappeared? Seems pretty obvious what happened
 
Is there a position paper or something I can refer patients to when they bring this movie up?
 
Orin said:
Is there a position paper or something I can refer patients to when they bring this movie up?
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Don’t waste your time trying to convince patients another doctor did nothing wrong. At best they consider maybe the movie is sensational. At worst they think you’re like the evil JHU doctors. I just say something neutral like “pediatric pain is always very sad” and move on.
 
Agast said:
Don’t waste your time trying to convince patients another doctor did nothing wrong. At best they consider maybe the movie is sensational. At worst they think you’re like the evil JHU doctors. I just say something neutral like “pediatric pain is always very sad” and move on.
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Brilliant- thanks in advance if anyone other that my physician friends (thus far) asks me about this.
 
futuredocflo said:
the only thing that really confuses me is Mayas condition now (granted i don’t know much about this specific pain disorder) it seems like the family believed ketamine to be the only viable treatment option but it seems like her symptoms have cleared without it? (not sure if that’s true)
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How is any of this confusing?

The mom was insane and harming her daughter. Now that Mom is out of the equation, daughter gets better. Not a difficult concept.

How many pediatric specialists are even recommending ketamine to a kid for this?

You know what else probably could have helped? Intubate her and keep her on propofol. Of course that is insane as well.

A lot of these pain syndromes need physical therapy and CBT and the understanding that the goal is to improve quality of life. No one can guarantee becoming pain free. The only goal is to make you more functional. This means you may still have to live with some pain and symptoms. Life is not fair unfortunately.
 
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