I'm the PP whose DD has CRPS. I can't get this documentary out of my mind. Frankly, I regret watching it.

Here is an article about Dr. Smith and some other families she accused of abuse:

https://stories.usatodaynetwork.com/torn-apart/sally-smith/

The link below has another story with more information about the events when Maya was hospitalized. It helps me understand why Beata was so upset about being reported to the Nursing Board, as her shifts were paying for all of Maya's treatments, which weren't covered by insurance. The stress of trying to find answers, exploring and funding treatments, and supporting her suffering child was already overwhelming without the abuse investigation to deal with.

https://www.thecut.com/article/child-abuse-munchausen-syndrome-by-proxy.html

I wish the documentarian would have devoted more time to the issue of retaining a private company to perform these abuse investigations. Perhaps that's a separate story, but it is one that needs to be explored with a critical eye.

I have not seen the movie but just wanted to note that getting caught in the judicial system when it relates to custody etc. is hell on earth. The system is set up to catch the bottom of the barrel and traumatic to all involved.

I watched this last night - I preface this with I am not a parent. I didn't see Beata as doctor shopping, I saw the Kowalskis as advocates for their kid who was in extreme deformative pain and trying to find someone/anyone who would help her. It helped that Beata was an RN and her documentation of the situation was, sadly, very prescient. The family's attorneys even stated that they would not have the foundation for the lawsuit if it wasn't for all the records/recordings she kept.

That the film makers then went and interviewed a lot of other families this happened to as a result of the same doctor and private welfare contractor, also was scary. The questionable doctor and her company have settled their portion of the lawsuit, it will be interesting to see what the result of the jury trial in September is, but I can't see it going very well for JH (since they were billing for the exact diagnosis Maya's doctors had diagnosed and treated her for), especially when Maya testifies.

If you read some of the synopsis of the case from the reporter in the film (found online), there are other things wrong with the case, especially what the social worker did regarding not getting either Maya's or her parents consent for the videotaping and stripping Maya down to her underwear to take photos. Like I said, not a parent, but there are a lot of things that upset me about this case from both the medical and judicial/CPS systems.

I would have offered to separate from my husband if it meant he could regain custody.

Anonymous wrote:From the research I did online, Complex Regional Pain Syndrome, "Younger people, children, and teenagers almost always recover, as do older adults with good circulation and nutrition." That's why there were alarms bells going off at John Hopkin's hospital in Tampa over the mother's insistence on the dosage of ketamine.

https://www.ninds.nih.gov/health-information/disorders/complex-regional-pain-syndrome

I hadn't heard of this case, but I also thought Munchausen's syndrome or Munchausen's by proxy.

As a parent of a child who has suffered from CRPS for more than five years, I would love to know the source of the statement that younger people almost always recover or how they define "recovery." As was the case with Maya, my child's "recovery" saw her go from being in a wheelchair because she was unable to bear weight on the affected limb to a return to playing sports. This was achieved through physical therapy, the use of CBT strategies, and sheer force of will on her part. While function has been mostly regained, and despite her perseverance, she still is in constant pain 24 hours per day. Managing pain during the day is the easy part; dealing with chronic pain at night is torture. I am grateful that my DD has learned to manage her significant pain, and if that is what recovery looks like for her, we have to accept it. That doesn't mean we won't try other treatments; I have researched ketamine and would support her in receiving that treatment if her pain overwhelms her in the future. However, to me, having been in the trenches, that statement in the NIH material sounds overly optimistic, lacking in nuance, and borderline dismissive.

As to Maya's mother, yes, I'm sure she was pushy and demanding, even before Maya's illness and even more so afterward. During our CRPS journey, I've definitely had some moments I am not proud of, where I went from begging for help to forcefully demanding it. I can't adequately express how torturous it is to watch your child suffer excruciating pain without answers from the medical community. I remember a period after my DD's diagnosis when I went to a therapist because I thought I might be experiencing early-onset dementia. If someone had separated me from my DD, I can't say what I would have done. The family's story is so tragic and displays a real lack of understanding of what families go through when a child has a difficult-to-understand and difficult-to-treat illness like CRPS.

The mom did come on pretty strong, and obviously did have some mental health issues. I don't think this would happen to a normal person.

The mother took the daughter to so many doctors until she found one who told her what she wanted to hear. It just seemed extreme to treat Maya the way they were. And the parents checked Maya into the hospital. No one forced them.

I cried watching this. What a nightmare! It would be one thing if the mom had been self-treating her daughter but she was following a doctors advice. And the daughter is old enough to speak for herself that she wanted to be with her mother and her pain was real. While I would never fault a hospital for doing their due diligence, this went beyond. The court only listened to one doctor who it is now known to have had a history of making the wrong call. It appears that the hospital was billing under the same diagnosis as the mom claimed which is highly suspect to me. I can understand the mom’s absolute desperation. As for the dad, he was advised to not fight the authorities if he wanted his daughter back.

What struck me is how incredibly heartless the judicial system was.

From the research I did online, Complex Regional Pain Syndrome, "Younger people, children, and teenagers almost always recover, as do older adults with good circulation and nutrition." That's why there were alarms bells going off at John Hopkin's hospital in Tampa over the mother's insistence on the dosage of ketamine.

https://www.ninds.nih.gov/health-information/disorders/complex-regional-pain-syndrome

I hadn't heard of this case, but I also thought Munchausen's syndrome or Munchausen's by proxy.

I watched it last night. And I might actually side with John Hopkin's hospital on this one. Maya's diagnosis and treatment seemed very odd to me. The hospital had to see if the child was going to improve and get better while being separated from her mother. And the father also seemed very quick to align with the hospital. I wonder if they sued the hospital.

Really interesting and moving documentary.

Advanced Complex Regional Pain Syndrome. Ketamine.

When did the family move from Chicago to Venice, Florida? Venice, FL has beautiful beaches in Sarasota County. It also has the oldest population in the U.S.

Is it about Munchausen syndrome? I am watching it now.

Has anyone watched? New documentary on Netflix. I plan I’m watching after the kids go down.

I did a quick Google and the story sounds horrific. I don’t remember hearing about it during the time 2016/2017 but maybe folks in Florida have?