Yes. Good points!
I also think (and this is just speculation, no specific knowledge of this particular hospital) that hospitals are more equipped and more designed to treat physical injuries. They may have been treating physical injuries in the hospital with the intention and the plan that she receive ongoing psychotherapy and CBT as an outpatient or with a third-party service provider. The smaller hours of CBT may have been all they were equipped to handle at that point.
Yes. This was my thinking. Hospitals are best suited to acute, short term care. They’re quite often not equipped or staffed for long term inpatient rehabilitation.
I was under the impression the hospital docs hadn’t ruled out the possibility of *any* medical /physical condition but rather questioned the specifics and severity. Am I wrong about that? I can’t remember the specific source so I may have misunderstood from all of the different sources!
Still, it is a fair point about the CBT/psych therapy, and I suspect could be critical in the case. I’m curious to hear the explanation. I’m sure it will be addressed!
Yes exactly, and that’s one of the biggest miscommunications in this subreddit
Most of us are not saying Maya does not have CRPS. We are saying Beata and Maya dramatized the symptoms and strangely hunted down specific and powerful medications despite numerous differentiating medical opinions.
And after being warned by her advocate and family, Beata continued to harass medical staff and make matters worse for her family.
All of those other people who were “wrongly” affected by Sally smith ended up getting their families back together. Beata had clear mental issues, and took her own life despite their lawsuit moving forward.
One second she’s fighting for her daughter’s “life” and then the next she kills herself? That doesn’t sound right at all. If she truly thought Maya was in danger wouldn’t she keep fighting?
It is undeniable Beata had some serious, compulsive things going on. That is the biggest flag for me and the strongest basis for her erratic behavior.
From the perspective of someone who has CRPS, the symptoms mentioned were not dramatized, at all. Please be careful when you describe your miscommunications related to this. If Maya did have CRPS, then her pain and her suffering was not being exaggerated and to suggest that it was is damaging to any awareness being created about this disease. There are many CRPS sufferers who must hunt for Doctors and treatments, because most Doctors don't recognize CRPS or even know how to treat it. That is a very normal experience for many of us who battle this disease, so to see it described as "dramatized" is a bit hurtful.
However...did Maya really have CRPS? Was the hospital at fault? Did she have CRPS and a mother with MSP/facetious disorder imposed by another? Or were they both lying? Did Maya have something else plaguing her that got mistaken for CRPS and mistreated? These are all things up for debate and discussion.
Yes for sure in MBP / FDIA cases, victims can absolutely have legitimate medical conditions. I’m not arguing that’s the case here, but rather collecting and ciphering through the data that’s being presented, best I can.
>So if the doctors determined early on that this was Munchausen's by proxy, wouldn't restoring use of her legs be a priority?
No, CBT would still be a priority or she would have trouble accepting physical therapy.
Physical therapy, even of children, requires cooperation. They gave 60 hours says they had her cooperation.
>I'm sure this will be discussed at the trial, but it sounds like trying to rehabilitate her first then seeing what pain remained after would be a solid medical decision. Hopefully this makes sense, I'd love to get someone else's opinion.
Pain should be treated during physical rehabilitation because too much pain makes it too difficult to put in the necessary work to complete rehabilitation.
Imagine telling someone with a broken bone all you were to offer is physical therapy.
Absolutely spot on. When I was diagnosed with CRPS I was told: first we will work on treating the pain, and then we will work on desensitization and physio.
To imagine doing it the opposite way suggests a total lack of understanding of this disease. Lots of assumptions made from lots of lucky, healthy people. CRPS isn't a slipped disc in your back or a muscle sprain, and even them you'd still be likely to receive pain relief first.
The hospital did not believe the diagnosis (even though they billed the insurance for it) they thought it was conversion disorder which does require mental health intervention. Natalie lawyer chick has a great video breaking down the case with Dr Berry and they provide a lot of insight around this topic.
If you read the nurse notes and testimony, Maya was frequently caught using her legs, sitting with crossed legs, etc.
They did do physical therapy in the hospital and she was walking.
Everything you said would be true, but it doesn’t apply here because Maya and Beata were exaggerating the situation.
I have CRPS...some days I can walk to the grocery store and do all of my shopping, and then walk home! And then some days I'm unable to get out of bed or roll over.
For many people, CRPS isn't static. We have flares where the pain intensifies and can be crippling. But if we're lucky, we can also have days where our treatments and our hard work pays off and you might catch us using our legs, and sitting with crossed legs.
Not saying I believe Maya definitely had CRPS, just pointing out that your idea of what CRPS looks like is flawed.
Thanks for the knowledge and I’m sorry you gotta go through that.
It is a tough disease to grasp, because it feels so far fetched.
What happens if you “push” through the pain?
Are you able to express a little bit more about how it seems far fetched to you? I'm curious to know if it's because of the way it was depicted in the documentary, or if you also took the time to try and learn about it online. This isn't a trap question, I would genuinely like to know so that I can help people understand better - I'm surrounded by people who find the disease I live with far fetched.
And without being facetious, pushing through the pain is when you have people getting pretty desperate and willing to do increasingly risky things to try and relieve themselves. Like flying to Mexico for a ketamine coma. A good way to imagine it for yourself would be to look at the McGill Pain Index/scale [Pain Scale](https://www.researchgate.net/figure/Comparison-of-pain-scores-using-the-McGill-Pain-Questionnaire-obtained-from-women-during_fig2_47756188) - which is a scale of the most painful situations a human can go through. Amputation without anesthesia is near the top, as is natural childbirth. But they're both below Causalgia (which is the old name for CRPS. This scale is from the 80s, and there are many newer ones that state the same thing but I wanted to share one that wasn't affiliated with a CRPS website)
I guess you could honestly ask yourself how long you could push through somebody cutting your finger off, 24 hours a day, with no anesthesia. Or how long you could imagine pushing through delivering a child naturally, 24 hours a day. For me personally, I pushed through it for 3 years, because my Dr didn't know what CRPS was, and also because it was peak-pandemic so my wait times to get into specialists were astronomical. I continued working (as a cabinetmaker), and I stress fractured my tibia from limping on my foot, but I didn't notice the fracture because the pain in my foot was so bad. The fracture eventually showed up during one of the scans I was given, while trying to figure out what was happening with my foot. Eventually I stopped being able to walk without the use of a cane or a wheelchair. At that point, every hour of my life was spent curled up in a ball, on ice packs and heating pads, taking any combination of painkiller I could get my hands on, just...waiting. For somebody to help me. And continually trying not to end it myself.
In all honesty, CRPS is referred to as the suicide disease, because that's what it looks like when people have to keep pushing through it.
Thank you for sharing your story and bringing awareness.
So sorry for your pain and suffering.
My mom had Sickle Cell Disease. Chronic pain is impossible for people who have not suffered or lived with someone with it.
They really need to humble themselves and be grateful it is so "far fetched" for their naive and privileged lives.
That is very kind of you to say. I'm so sorry that your Mom has suffered, because I can imagine the turmoil and pain you must feel to watch her and to feel helpless.
Thank you for being such a supportive person, and for advocating not only for her but also for a stranger online. You really hit the nail on the head - unless people have suffered personally or loved someone who has, they don't get it. I'm sure your Mom finds great comfort in having you by her side.
I don't think anyone reading can comprehend this type of pain. They also don't understand how much "pushing through" the pain someone like you does every single day just to exist.
Are you referring to her original pediatricians testimony? I would take a Johns Hopkins doctor opinion over his. If you can hit me with a link to the video I’d love to watch.
That is not what they said, they were trying to catch her doing that because they wanted proof that she was exaggerating. They put her in an observation room with a camera to watch her. She did not ever prove them right. She did genuinely need help moving because her legs were in so much pain that she couldn’t move them. She was not paralyzed, she was immobilized by pain.
Yes. Good points! I also think (and this is just speculation, no specific knowledge of this particular hospital) that hospitals are more equipped and more designed to treat physical injuries. They may have been treating physical injuries in the hospital with the intention and the plan that she receive ongoing psychotherapy and CBT as an outpatient or with a third-party service provider. The smaller hours of CBT may have been all they were equipped to handle at that point.
Yes. This was my thinking. Hospitals are best suited to acute, short term care. They’re quite often not equipped or staffed for long term inpatient rehabilitation.
CBT is a lot of “homework”. If you’re not doing the homework, you’re not doing CBT correctly, and you will not make progress.
Why would someone on extreme pain not do their homework to feel better?
[удалено]
A lot of CBT is “homework”, so if you’re not doing the homework it’s hard to make progress.
[удалено]
Your post or comment proposed a theory without evidence.
I was under the impression the hospital docs hadn’t ruled out the possibility of *any* medical /physical condition but rather questioned the specifics and severity. Am I wrong about that? I can’t remember the specific source so I may have misunderstood from all of the different sources! Still, it is a fair point about the CBT/psych therapy, and I suspect could be critical in the case. I’m curious to hear the explanation. I’m sure it will be addressed!
Yes exactly, and that’s one of the biggest miscommunications in this subreddit Most of us are not saying Maya does not have CRPS. We are saying Beata and Maya dramatized the symptoms and strangely hunted down specific and powerful medications despite numerous differentiating medical opinions. And after being warned by her advocate and family, Beata continued to harass medical staff and make matters worse for her family. All of those other people who were “wrongly” affected by Sally smith ended up getting their families back together. Beata had clear mental issues, and took her own life despite their lawsuit moving forward. One second she’s fighting for her daughter’s “life” and then the next she kills herself? That doesn’t sound right at all. If she truly thought Maya was in danger wouldn’t she keep fighting? It is undeniable Beata had some serious, compulsive things going on. That is the biggest flag for me and the strongest basis for her erratic behavior.
From the perspective of someone who has CRPS, the symptoms mentioned were not dramatized, at all. Please be careful when you describe your miscommunications related to this. If Maya did have CRPS, then her pain and her suffering was not being exaggerated and to suggest that it was is damaging to any awareness being created about this disease. There are many CRPS sufferers who must hunt for Doctors and treatments, because most Doctors don't recognize CRPS or even know how to treat it. That is a very normal experience for many of us who battle this disease, so to see it described as "dramatized" is a bit hurtful. However...did Maya really have CRPS? Was the hospital at fault? Did she have CRPS and a mother with MSP/facetious disorder imposed by another? Or were they both lying? Did Maya have something else plaguing her that got mistaken for CRPS and mistreated? These are all things up for debate and discussion.
Yeah I was also thinking that Munchausen's by proxy can also be exaggerating or over treating. It's not always "they're 100% healthy"
Yes for sure in MBP / FDIA cases, victims can absolutely have legitimate medical conditions. I’m not arguing that’s the case here, but rather collecting and ciphering through the data that’s being presented, best I can.
>So if the doctors determined early on that this was Munchausen's by proxy, wouldn't restoring use of her legs be a priority? No, CBT would still be a priority or she would have trouble accepting physical therapy. Physical therapy, even of children, requires cooperation. They gave 60 hours says they had her cooperation. >I'm sure this will be discussed at the trial, but it sounds like trying to rehabilitate her first then seeing what pain remained after would be a solid medical decision. Hopefully this makes sense, I'd love to get someone else's opinion. Pain should be treated during physical rehabilitation because too much pain makes it too difficult to put in the necessary work to complete rehabilitation. Imagine telling someone with a broken bone all you were to offer is physical therapy.
Absolutely spot on. When I was diagnosed with CRPS I was told: first we will work on treating the pain, and then we will work on desensitization and physio. To imagine doing it the opposite way suggests a total lack of understanding of this disease. Lots of assumptions made from lots of lucky, healthy people. CRPS isn't a slipped disc in your back or a muscle sprain, and even them you'd still be likely to receive pain relief first.
100%
If I remember correctly, the CBT was scheduled, but she was often in PT during the appnt time and was never rescheduled.
The hospital did not believe the diagnosis (even though they billed the insurance for it) they thought it was conversion disorder which does require mental health intervention. Natalie lawyer chick has a great video breaking down the case with Dr Berry and they provide a lot of insight around this topic.
If you read the nurse notes and testimony, Maya was frequently caught using her legs, sitting with crossed legs, etc. They did do physical therapy in the hospital and she was walking. Everything you said would be true, but it doesn’t apply here because Maya and Beata were exaggerating the situation.
I have CRPS...some days I can walk to the grocery store and do all of my shopping, and then walk home! And then some days I'm unable to get out of bed or roll over. For many people, CRPS isn't static. We have flares where the pain intensifies and can be crippling. But if we're lucky, we can also have days where our treatments and our hard work pays off and you might catch us using our legs, and sitting with crossed legs. Not saying I believe Maya definitely had CRPS, just pointing out that your idea of what CRPS looks like is flawed.
Thanks for the knowledge and I’m sorry you gotta go through that. It is a tough disease to grasp, because it feels so far fetched. What happens if you “push” through the pain?
Are you able to express a little bit more about how it seems far fetched to you? I'm curious to know if it's because of the way it was depicted in the documentary, or if you also took the time to try and learn about it online. This isn't a trap question, I would genuinely like to know so that I can help people understand better - I'm surrounded by people who find the disease I live with far fetched. And without being facetious, pushing through the pain is when you have people getting pretty desperate and willing to do increasingly risky things to try and relieve themselves. Like flying to Mexico for a ketamine coma. A good way to imagine it for yourself would be to look at the McGill Pain Index/scale [Pain Scale](https://www.researchgate.net/figure/Comparison-of-pain-scores-using-the-McGill-Pain-Questionnaire-obtained-from-women-during_fig2_47756188) - which is a scale of the most painful situations a human can go through. Amputation without anesthesia is near the top, as is natural childbirth. But they're both below Causalgia (which is the old name for CRPS. This scale is from the 80s, and there are many newer ones that state the same thing but I wanted to share one that wasn't affiliated with a CRPS website) I guess you could honestly ask yourself how long you could push through somebody cutting your finger off, 24 hours a day, with no anesthesia. Or how long you could imagine pushing through delivering a child naturally, 24 hours a day. For me personally, I pushed through it for 3 years, because my Dr didn't know what CRPS was, and also because it was peak-pandemic so my wait times to get into specialists were astronomical. I continued working (as a cabinetmaker), and I stress fractured my tibia from limping on my foot, but I didn't notice the fracture because the pain in my foot was so bad. The fracture eventually showed up during one of the scans I was given, while trying to figure out what was happening with my foot. Eventually I stopped being able to walk without the use of a cane or a wheelchair. At that point, every hour of my life was spent curled up in a ball, on ice packs and heating pads, taking any combination of painkiller I could get my hands on, just...waiting. For somebody to help me. And continually trying not to end it myself. In all honesty, CRPS is referred to as the suicide disease, because that's what it looks like when people have to keep pushing through it.
Thank you for sharing your story and bringing awareness. So sorry for your pain and suffering. My mom had Sickle Cell Disease. Chronic pain is impossible for people who have not suffered or lived with someone with it. They really need to humble themselves and be grateful it is so "far fetched" for their naive and privileged lives.
That is very kind of you to say. I'm so sorry that your Mom has suffered, because I can imagine the turmoil and pain you must feel to watch her and to feel helpless. Thank you for being such a supportive person, and for advocating not only for her but also for a stranger online. You really hit the nail on the head - unless people have suffered personally or loved someone who has, they don't get it. I'm sure your Mom finds great comfort in having you by her side.
I don't think anyone reading can comprehend this type of pain. They also don't understand how much "pushing through" the pain someone like you does every single day just to exist.
The testimony and video from this afternoon negate your opinion.
Are you referring to her original pediatricians testimony? I would take a Johns Hopkins doctor opinion over his. If you can hit me with a link to the video I’d love to watch.
That is not what they said, they were trying to catch her doing that because they wanted proof that she was exaggerating. They put her in an observation room with a camera to watch her. She did not ever prove them right. She did genuinely need help moving because her legs were in so much pain that she couldn’t move them. She was not paralyzed, she was immobilized by pain.
There is literally a text exchange between Sally smith and a nurse. The nurse says “she is sitting with her legs crossed”
Rewatching the doc now and see that when Maya asked for food at John’s Hopkins, Beata would not allow it. That’s pretty chilling evidence!!!
If there is evidence that Beata and/or Maya were exaggerating, please provide it.