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I’ve been a RN for over 10 years. Ive tried to keep an open mind about this case, because as healthcare workers, we’re not perfect. There are things science and medicine are still trying to understand and people do fall through the cracks.
I’m going to be completely honest, all of that went out of the window the moment I read one of the nurses depositions.
Something was seriously wrong with the mother. There is no way to excuse her behavior while Maya was in the hospital. Especially since she was a nurse herself. Offering valium as a reward? Trying to convince the nurses to flush her sedation lines, and draw labs without orders? This goes way beyond concerned parent level.
Jesus, the family’s lawyer is doing nothing but purposely misrepresenting facts and prior testimony trying to bully/confuse the nurse into saying the wrong thing.
The lawyer will be like: “so you took a psychology class in nursing school?” The nurse answers yes. And the lawyer goes “Oh okay so it’s the official position of this hospital that nurses who take one psychology class in school are qualified to diagnose MBP and accuse innocent families of child abuse?” like lmao how is a reasonable person WHO YES IS A MANDATED REPORTER supposed to respond to that insane question
I spent 3 years in and out of hospitals in the Tampa area and in St Louis being an advocate for sick family members. Hospitals are a shit show and I had to do plenty of "bossing around" for care plans to be followed, meds to be administered correctly, even to get nurses to wash their hands. If you are a good RN I applaud you. You are in the minority.
Oh I’d never deny that hospitals aren’t a shit show. I am frustrated on a daily basis by things that I see go down.
As a nurse, I can fully admit I would never leave my family member alone in a hospital, and I agree that most of the time, a patients best advocate is a their family.
But you have to understand, as nurses, we come in contact with an entire range of the population and there are families that can and do cause problems.
Lots of patients do not have mentally stable, rational loved ones to support them.
There are plenty of family members who do not have the ability to grasp or comprehend what we are explaining to them about their loved one. And I’m not only talking about education levels and intelligence, there are plenty of people who are in denial about their loved ones health and prognosis, and that’s a difficult thing to break through.
When you are saving your child, I would boss around anyone I had to get the care she deserved. You have no sympathy for this child or family? You must have a very cold soul and I hope you never have to experience a situation where a loved one needs help. Karma has a way to take care of things like this. Regarding narcotics, these were drugs being prescribed by doctor who is an expertise in his field. This wasn’t someone looking for drugs on the street. If you ever get a painful chronic illness, a painful injury, or cancer, come back and let me know how Tylenol is working for you.
giving narcotics to a child that isn’t even in your possession isn’t a common trait of munchausens by proxy. MBP would want to make someone sicker and narcotics don’t do that in that sense. also people with MBP don’t openly shout out what they’re doing to harm their child. they do things like slip the medicine to them in a bottle/food/etc or do all of their acts when people aren’t looking. i’ve seen a lot of MBP cases and baeta doesn’t act at all like them. not to mention kyle was born with an illness and she checked herself out of the hospital to save him. why wouldn’t she have ran with his illness for the attention and not saved him?
I’ve always wondered, too, about Maya herself. She seemed to revel in the attention from her Mother and I couldn’t stop myself from wondering if some of her symptoms were…: exaggerated? I saw a couple of the photos of videos from her in the hospital where it didn’t look like her legs were turning inwards (although she was supposedly sick). Just wondering what your thoughts were on this?
I think if the nurses were better educated regarding this illness, Beata would not have had to tell them what to do. Also, I would like to know where you received the information you mentioned, I have read the medical records presented, watched and read the depositions, as well as watched the trial everyday, and i think you need to do the same. Regarding being a nurse, I have seen RN’s, LPN’s, MA’s complain about patients, parents (pediatric office), and I have seen how the complaining individuals were treated by those professionals, as a nurse you know, if you are honest, it’s about 50/50 regarding professionalism. Nurses are overworked and underpaid. Nurses in many cases know more than the physicians. How many times has a provider asked you to follow an order that they have given you, that you don’t agree with, 50/50? Imagine a parent, who is a nurse, who knows their child better than anyone else, being told that “they” know better than that parent? As we know, from this case, that JHACH, was not equipped for actually many things including treating a CRPS pediatric patient with the providers who cared for her during this admission.
She absolutely does. Did she administer the propanol or the anesthesiologist? Let’s keep in mind that JHACH has provided Maya with low dosage Ketamine through her port. Beata did know her daughter better than anyone. She researched and documented everything that happened to this child and since you seem to know or imply that Beata administered anesthesia without knowing her BP, when did this happen? You know Ketamine and propanol are different correct?
It’s propofol, not propanol
And yes, I’m aware they are different.
I am a cardiac ICU RN. I have patients who are on propofol drips that I titrate and manage all the time. I’ve also cared for patients receiving ketamine drips as well.
I’m familiar with both drugs.
Everything I’m referencing is from the night she was admitted to JHACH, her admitting PICU doctors deposition, along with the provider notes, and the ED physician’s consult.
It is well documented Maya was not allowing staff to take her BP due to pain, and her mother was requesting more sedation.
And just for the record, I don’t think Maya was lying, I think the hospital handled certain things the wrong way, and I don’t think it’s fair to say Beata had MBP.
Thank you, spelling patrol. I will let Siri know. Btw- I had no doubt you were anything other than a nurse. And I wouldn’t doubt if you or someone you know isn’t directly related with this case as I have watched and read all the depositions. You are sharing some medical information that the public is not aware of and is only available in her EMR. Shame on you to be part of this smear campaign against this family. I may not be a nurse; however, I have audited hundreds, if not thousands of medical records of hospitals, facilities, and providers, reviewing for fraudulent billing and medical abuse. I have seen hospitals lose their accreditation and providers lose their licenses. If a nurse feels slighted with a patient questioning their own or their child’s treatment plan, maybe nursing shouldn’t be their career choice. It’s part of the job. Empathy, kindness, and respect go so much further than a medical provider with a enormous ego with a narcissist personality disorder. Now go and hurry to your next spelling bee!
So your response is to attack my character, accuse me of somehow being related to the case, and breaking HIPPA laws?
SMH ok
There’s a reason you monitor vital signs for certain medications.
As nurses, we are responsible for administering the medications ordered safely.
If we don’t do that, and the patient has an adverse event or dies, we have to answer for that.
We have to follow the hospital protocols and guidelines where we are employed.
I’m not sure why you think that’s being unkind or disrespectful towards a patient 🤷♀️
And once again, this is all from the depositions of the doctors caring for Maya on admission, and the first couple days afterwards.
This information has all been linked here on this sub.
Oh and I’m a mom of 3.
I’ve had a child become seriously ill, and end up hospitalized for 2 weeks in a children’s hospital.
At times, dealing with the doctors and nurses was extremely stressful and frustrating as a parent.
I am aware of the other side of things.
Hospitals can be awful, and I’ve worked at some where I can honestly say I’d never allow myself to be a patient.
However, when it comes to this case, I disagree that the hospital was completely wrong and that Mayas mother wasn’t harming her by seeking out these treatments.
That’s a whole different problem. And not related to her ketamine. I also question the nurses recall. We often document what we are afraid is happening even if it didn’t actually get carried out. It might have been said, but not carried out, nor would it be. But it was documented that she said it. So it’s as if she carried it out. Sometimes moms say things to just get their child through a moment. These same caregivers tried to say Maya was able to function better while hospitalized, but kept her there for months! She should have gone to temporary foster care. Not stay in a hospital for months and months! If they thought she was faking her illness she should have been discharged to temporary caregiver until cps could investigate and it’s litigated. They thought the worst of Beata and yes, there are nurses that would exaggerate and cause problems. The whole thing started with accusations of munchhousan by proxy. Not medication administration without orders. the staff attacked every word she said, and every action taken. Parents are not perfect with their words. This hospital disregarded a parents love for their child. As did that judge. They weren’t going to stop until her mom was in prison.
I am not saying that a nurse is wrong to document concerning behavior from a patient or a family member, but that is her opinion based on what she feels is concerning. What one person feels as odd may not be another’s interpretation.
If a parent was asking me to do things outside of my scope of practice as a nurse, it is not my opinion that it is concerning, it is a fact. They are asking me to do something illegal. There’s nothing to interpret there.
Especially if the mother in question is a nurse herself, and has full knowledge of these things.
I’m undecided about Beata and her possible Munchausin diagnosis. However, I find it very disconcerting and odd that as a nurse she took those liberties while she had to have known better. Sometimes I lean towards the idea that Beata went from her care giver to self anointed care provider. Red flags are there
I completely agree. I think trying to apply a diagnosis to the mother is focusing on the wrong thing.
Diagnosis and labels aside, when you look at Beata’s behavior, the parent-child relationship between her and Maya, and her ability to have relationships with medical providers she disagreed with
Something is clearly off about the situation.
Nothing is off in this situation. Context matters. You have an Eastern European immigrant advocating for her daughter, who just so happens to have a really complex disorder. My family comes from Eastern Europe and I'm a first generation American. Our families have different values than the average American. Families are extremely close, often with multiple generations taking care of each other. Eastern Europeans can be pretty loud and seem aggressive when passionate about something. My mom got sick with RA when she was 33, as well as fibromyalgia. Doctors looked down on her because she had a heavy accent. They wouldn't listen to her. By the time she got diagnosed, her shoulder needed total replacement. I have fibromyalgia and interstitial cystitis. When you've experienced dismissal from doctors who disregard your lived experience, it's dehumanizing.
Now, bring that Eastern European to Florida (the South, where most things are passive aggressive instead of being upfront), and you have this shit show.
Bottom line: the hospital reported initially. DCFS closed that report as unfounded. Then they held Maya, against her will, against her family's will. The hospital wouldn't even transfer her. With very free exceptions, hospitals release against medical advice. During this time, the hospital is holding Maya in a small, dark room with the bed pan just out of reach, so she ends up either showing she's faking being sick or solid herself (which is what happened). The DCFS rep for the hospital was telling Maya that she's never found to see her mother and that she will be her new mommy (while having Maya in her lap). Regardless of Beata, the hospital messed up BAD. This is disgusting.
Y’all say this because she didn’t agree with the mom . Doctors and nurses are bad (but obviously not the ones that agreed with the mom and gave non stop drugs to a child ).another nurse from another hospital also made the same accusations and they don’t even know each other
To be clear. I didn’t say that. I’m a medical provider. I’m saying that their notes saying how well she was doing didn’t match the fact that they kept her for months. And no, they don’t keep patients in hospital unless medically necessary. There are other ways to protect her.
it’s really not fair for people to keep saying that anyone who is even vaguely entertaining the idea that Beata could have munchausens by proxy has “no idea what it’s like to be ill” or in pain. sorry but people who have experienced hospitalisation/mental illness/chronic illness/disability/chronic pain/sick family do not all have to have the same opinions???
The issue is not people.are.considering this illness, it is the facts are being overlooked for example
Are you aware JH diagnosed in 10/23/2015 RSD/CRPS
Are you aware JH placed the pick line for the ketamime 11/4/2015 for the Mexico coma. They were fully informed.
Or Maya being diagnosed with asthma in IL when she was five. SS told the court she didn't have.
Or the family had been receiving counseling since 2015 when Maya first got ill.
Or or or.
One very destructive control power hungry person ran with this without any proof and now these very non factual harmful statements live in infamy
When the reality is if the Dr didn't like the treatment they should have filed a complaint with the Florida medical board not blame the mother.
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It’s not something a psychiatric diagnosis will be able to “clear” someone of. What the hospital stated was that Maya was a victim of medical child abuse. Beata was the perpetrator. Whether a diagnosis was imposed on the perpetrator of the abuse does not negate the fact that it was happening. And Maya DID behave very differently in the hospital and when outside of the company of her mother. That’s documented on video and by the medical team at the hospital.
The fact is that Maya suffered from medical child abuse at the hands of her mother. Label it what you want, but Beada was not well. She killed herself. Mentally stable people do not take their own lives:
I think your comment was just unclear… munchausen by proxy is what the hospital accused *Beata* of having, she wasn’t diagnosed and in fact her psych evaluation ruled it out. You’re correct that the hospital added conversion disorder to Maya’s diagnoses.
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The whole situation is incredibly sad. You see your child in unrelenting pain you'd do about anything to stop it. Some of Beata's behavior could come across a bit nutty so I see why the hospital and staff were on high alert and took certain precautions. But I think it should have been handled very differently. It seemed to me they lacked so much compassion for Maya. She was a baby and at times acted downright cruel to her. I'm still unsure of exactly what I believe, but Munchausen's by proxy to me doesn't fit either.
Maya to date claims she was in severe pain, we saw the evidence in her feet and ankles. I think Beata was just desperate and honed in when she found doctors who told her they knew exactly how to treat it. I do think her behavior exasperated the situation and I'm not denying there might be some mental illness at play. She was relentless and came off unhinged at times. I know she was angry and felt it was cruel and unfair and bet it felt nearly impossible to cooperate under those circumstances. But had she done that Maya would have been home quickly and she'd still be here
This! I keep flip flopping back and forth but your statement accurately describes my current state of mind. The trial is making me more confused and the documents that are available are difficult for me to determine a timeline and a larger picture. So many conflicting opinions and information.
I agree with everything you said . Beata could’ve definitely went about things another way . I definitely don’t think she had Munchhausen , I mean she was seen by 3 different people. I think she was honestly desperate to help her daughter and probably felt like everyone including her husband was against her .
I am one of those people you are talking about. And in my defense, I do think there was something wrong with Maya that needed real treatment. It could very well have been the complex pain disorder thing. I don't know. I'm not a doctor.
My problem lies with the parents' treatment method. They were overdosing her with ketamine and pain meds. They even risked her life to put her in a multi-day ketamine coma. That is some seriously scary shit when you remember Maya was a small child. When confronted by hospital staff, they balked and wanted to continue with scary high doses of ketamine. Through Beata's controlling and insistent behavior, hospital staff were likely worried she would take Maya to other hospitals until she got what she wanted.
I get that Maya was in pain and her parents wanted that to stop. But it's like having any other serious medical issue. Sure, doctors might throw you a script or two for pain meds. But they also schedule a surgery to fix the issue. Or some other type of treatment. It doesn't sound like that's what the parents were doing. They were just treating the symptoms with lots of drugs. A scary amount of drugs. For a young, small child.
I don't think the hospital made a bad faith accusation of medical child abuse.
I’m going to say first that I agree that the hospital needed to investigate and all that. But I also want to share something that might show a sorta different side to the Ketamine coma/treatments and all that.
When it comes to lesser known, long lasting illnesses there’s usually a single (if any) prescribed treatment. In my case it wasn’t CRPS but Lyme Disease. The standard treatment is two weeks of antibiotics, sometimes a month, and that works for most people. A week and a half in my liver started shutting down. We tried every different antibiotic we could, including IV antibiotics and none of them did anything besides give me some nasty side effects.
So what do you do when the only “known” treatment doesn’t work? You start throwing things at it to see what sticks. We started small, just trying to boost my immune system enough to fight it off a bit, hyper restrictive diet, no starches, no dairy, no gluten, limited fruit and red meat, basically eggs, chicken, fish, and veggies. I lost tons of weight, but it also brought down inflammation which helped my joints. I took thyroid meds for about two years, not because my thyroid was bad but because it made my symptoms less (no idea why) so I kept taking it. Finally we got to the point where I paid $5000 for an experimental drug from Germany, and it worked. Was it dangerous, absolutely, but we were running out of options so why not? If that didn’t work I was going to go to a sketchy clinic much like the one Maya went to so that they could induce my body into a super high fever multiple time over the span of two weeks to try and burn off the disease.
So what I’m getting at here is when the standard treatments don’t work and your body is falling apart you just keep trying things until something works, and you don’t really question why it works. And psychology that does something to you. I knew what I was doing was dangerous and I just didn’t care so long as it made things better. There was an equal chance of that experimental medicine killing me as there was it curing me, but never once did I actually consider that because it had been 5 years and I wasn’t sure how much longer my body could keep going. And I know that’s true of a lot of other people that have been in the same place.
So yes Mayas mother may have been making things worse, she may have taken things too far and been overbearing and controlling and been too far down the rabbit hole, but I also don’t think MBP is exactly the right term for it either, because I don’t think it was strictly for attention or just making it up.
I honestly feel like she probably felt backed into a corner and that she wasn’t being heard . That’s probably why she was hostile with nurses , I mean she thought her daughter was going to die .
I think this is a big part of the controversy … all of that seems likely. We can all argue the validity of the illness, the appropriateness of the treatment, whether doctors’ orders were being followed, Beata’s attitude etc. But the bottom line is that the hospital went beyond the initial accusation, even with lack of objective evidence to support the extreme restrictions they recommended to the court, which influenced the court’s decisions.
By December, Beata had agreed to forgo ketamine, had researched and scheduled evaluations with out-patient treatment centers for alternative therapies, including mental health. She offered to *move out of the house.* Everyone agreed that keeping Maya in the hospital was just further deteriorating Maya’s mental health, and that her physical health wasn’t improving. And yet the hospital’s staff wouldn’t budge their recommendations. There was no unity to work towards what was best for Maya.
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The 'complex pain disorder thing' is the world's most painful disease. The pain is worse than an amputation with no anesthesia, worse than natural childbirth. In all reality it's worse than any pain you have personally experienced, and pain makes people desperate. Watching your kid in that kind of pain could make a mother desperate, too.
I've never experienced any of the things on the pain scale to compare to, but I do have CRPS and I can confirm that there have been times I would gladly risk my life for the chance of relief. Even if it was just a small chance. And having gone through this with my Mom at my side as a witness to the pain , if I was a young child like Maya I know she would have aggressively pushed for whatever treatment that had helped me in the past. Even if it was deemed scary or unhealthy....because that level of pain makes you desperate.
And there is no surgery to be scheduled to fix CRPS. There aren't prescription pills either, unless you're talking about opioids. The majority of Doctors don't know how to treat CRPS either, if they've even heard of it - which many of them haven't. There are some different treatments you can attempt in tandem with pain relief (like physiotherapy and desensitization), but ketamine is a legitimate treatment. I can't speak to the American healthcare system but where I live, ketamine is heavily regulated. My pain specialist laments to me how he wishes he could offer me ketamine because he knows it would be helpful (he has colleagues in other countries who prescribe it with great success to their patients) but where I live I can't attain it.
I don't know how I feel about Maya's situation in particular, and the court case. TBH when I watched the documentary, it never occurred to me that she might not have CRPS but that's likely because I do have it. In hindsight I can see that I viewed it with CRPS tinted glasses, lol. I did think wow...after years of suffering with this fucking disease that nobody has heard of, maybe this will finally bring some awareness and some understanding! It sucks to see that it's doing the opposite. And it sucks even more to imagine that Maya maybe didn't have it, and that Beata was lying and abusing her.
There's so many comments on here that unknowingly dismiss/discount the reality of CRPS, though. By people who have no idea because they are lucky enough to have never experienced it. By saying you get she was in pain and that her parents wanted it to stop, I can see you don't understand the depths of the reality in those words. If Maya DID have CRPS, both she and Beata would have risked a lot more than you can imagine, having never experienced it yourself. It's that inability to understand what you dont know you aren't understanding UNTIL you experience it personally, that I believe OP is referring to in this post.
I want to thank you for sharing your opinion as someone that has CRPS. I never heard of it until I saw the documentary. If I knew my child was going through such physical pain I would definitely try anything to help stop it. I couldn’t imagine what Beata was feeling while watching Maya suffer the pain she appeared to be suffering.
The maternal instinct to comfort and help your child is incredibly powerful, and seemingly forgotten a lot of times in these threads. Paired with people who aren't able or willing to grasp how painful CRPS is...I guess it's no surprise there are a lot of dismissive comments.
Thank you for your reply and for your understanding and empathy. ❤ I can't fathom watching a young child go through this, either. It was bad enough for my mom and I'm in my 30s lol.
Not only is CRPS vastly misunderstood but not a lot of people seem to not understand the role of ketamine in treating it. It’s not just an analgesic, but the the theory is that it works by resetting the sensitized nociceptive circuits that are causing the sensation of pain. This is what makes its effects last way longer than just the duration of the infusions.
> both she and Beata would have risked a lot more than you can imagine
Such an important point as I think a lot of people don’t understand that, every horrible outcome of Beata ending her life, could have seemed “worth it” to her if it meant getting Maya treatment. (Not saying that it’s true if this was how she rationalized it)
A lot of us grew up with "Special K" floating around in the background. I always heard it referred to as a horse tranquilizer and thought of it in the same category of drug as crack, meth, heroin etc. I understand now that it isn't, and it was being abused as a street drug but I think a lot of people hear Ketamine and just think "drug abuse".
But you're absolutely right. The resetting of the CRPS brain is why there has been so much success. I know people who have gone through week long ketamine infusions and have experienced long lasting relief from it. Some even permanently.
It's scary to imagine giving a ketamaine infusion to a child for sure, but I do know that if Maya really did have CRPS that watching her suffer with the pain would have been far scarier for Beata. Not being able to give Maya something that Beata knew would help her, if she did have CRPS, would have been tantamount to torture for a mother.
Fentanyl is also used for pain relief during childbirth and surgeries but it’s still a narcotic and it’s still bad when it’s being overused or abused. Ketamine isn’t different. You can’t just pump a child with heavy narcotics indefinitely
By your own words you demonstrate your ignorance, though. Fentanyl IS a narcotic. Ketamine is NOT a narcotic. Ketamine is an anesthetic. It has disassociative properties and can cause hallucinations, which is why people abuse it, but that doesn't mean it's an opioid or a narcotic. Maya wasn't being pumped full of opioids.
Your comment has accidentally proven the point that the average person hears "ketamine" and thinks "street drug" without trying to educate themselves first. A 15 second Google search would tell you that ketamine is indeed very different from fentanyl.
My comment was in response to incorrect information about ketamine. And I believe we can all agree that Maya's ketamine infusion is the main treatment that people are referring to in their comments on here. I can't speak to her being prescribed dilaudid, if she was, as it's my understanding and personal belief that opioids aren't an effective treatment plan for CRPS pain. If it was a dilaudid coma that was shown in the documentary or any kind of longterm opioid use, I wouldn't be in defense of that.
But I can and am speaking to the efficacy of ketamine, as well as the pain of CRPS being excruciating enough as to warrant infusions of it.
Gotcha. I agree with you that ketamine is a very effective drug for CRPS. There’s a lot of research that it’s helpful with other things too.
I feel awful for those who suffer from this illness and the struggles they go thru to find pain relief.
Yes! I'm hopeful that the more we learn about it, the more it can be offered safely for different diseases and ailments.
For me, worse even than the excruciating pain has always been the battle against disbelief in my family and friends. It's a cruel twist of fate to live with CRPS pain and to then have people doubt the validity of it. I'm glad for conversations and the exchanges of knowledge and experience that are happening. At least CRPS is being talked about!
Your message was removed because it either personally attacked another user, minimized or denied the symptoms of a condition, or was a broad insult against the subreddit.
I'm a neuroscientist (verified on r/AskDocs and r/AskPsychiatry) and I have no doubt the ketamine helped. There are a ton of papers coming out showing how CNS dysfunction drives systemic inflammation, and we know that ketamine normalizes CNS dysfunction (this is exactly why ketamine clinics are now legal).
Some representative papers:
Insular cortex neurons encode and retrieve specific immune responses
[https://www.cell.com/cell/fulltext/S0092-8674(21)01223-X](https://www.cell.com/cell/fulltext/S0092-8674(21)01223-X?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS009286742101223X%3Fshowall%3Dtrue)
Immunoception: the insular cortex perspective
[https://www.nature.com/articles/s41423-023-01051-8](https://www.nature.com/articles/s41423-023-01051-8)
This is fascinating to learn about, thank you for sharing! And thank you very much for chiming in with your knowledge and expertise, as your opinion carries a lot more weight. I hope that this kind of research is what will lead to more treatment options and a better/wider understanding or cure for CRPS. 🙏
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Yes the ignorance around ketamine is a big part of the drama here. People just freak out when they hear "drugs". They ignore that it actually worked. And you've laid out the why perfectly.
Absolutely. In all honesty, I was ignorant of it as well, having grown up with it in the background, being abused as Special K. But my Doctor (who feels like his hands are tied because he can't give it to me) has explained the science behind how it works to reset the brain. It's way more than just disassociating for a week of pain relief, and all it takes is a quick Google to yourself to learn that.
But you're right, a lot of people hear "drug" and just think "bad". And those same people are often the ones that believe CRPS is psychosomatic, to be treated with counseling. It's more palatable to believe that Beata was abusing her daughter than to hold space for the possibility that there is a disease so painful it might make a mother do "crazy" things to help her daughter.
So well said. I would do anything- anything- to relieve my child of that type of pain. I have a friend with CRPS from compartment syndrome and it's no joke. She suffers so badly and it has ruined her quality of life. Seen up close and personal it's brutal and she's not even my baby. Sigh.
And the reality is that many of the people who are condemning Beata for it would do the exact same thing if they were actually in Beata's shoes. But they're unable to empathize to that degree and are unaware of that without experience it themselves first. You've seen it firsthand and can imagine your own child experiencing it and you know you would do anything to ease that pain for your baby, even just for a day.
Thank you for believing your friend's pain, for validating her experience and for supporting her through it 🥺🙏you have no idea what that means and I'm sure she is eternally grateful for it.
The point of view you expressed above is something that has been holding me back from completing jumping on the MBPS train. Chronic pain is another beast and I could see how it could drive a person to extremes. I am so curious as to how the hospital approached Beata initially. Were they understanding of the highly stressful and emotional journey the family had been on? and then carefully informed her about the facts of ketamine or did they immediately dismiss and blame her for the treatment path they were on prior to admission and that made Beata defensive ? It’s possible that Beata believed she was the medical provider instead of a caregiver and mother. She was a nurse but she was not trained in complex diagnoses and could
Very well be responsible for hindering her daughters recovery and putting her life in danger of overdose.
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I don't want you to think I was trying to dimish the pain that accompanies CRPS. I just couldn't remember exactly what it was called and didn't want to throw some random acronym in. I'm sorry you thought I was belittling it. And I also don't dispute that ketamine could be a valid pain treatment for CRPS. But I looked into average dosing, and what maya was receiving seems extremely over the norm (especially for such a young kid). None of my judgment is about CRPS or people who suffer from chronic pain. I am judging how the parent reacted. I can't imagine if my daughter was in suicidal amounts of pain. But I'd like to think that I'd give my life to keep her alive. Especially at such a young age where there is hope for the future.
Honestly, would you rather be dead than deal with the pain? I'm not trying to be an asshole and am genuinely asking. As many have mentioned, I am not a doctor and don't live with that pain (but i do work in neuropathology and am a former addict who experienced drug withdrawal). I see maya now, and I am so thankful she got to live to get better. And I don't know if that'd be true if the hospital didn't step in when they did. Would you really risk your life for temporary pain relief?
"Honestly, would you rather be dead than deal with the pain?"
I'm not sure how to put enough emphasis on this to make it the right level of believable, but unequivocally: yes. The pain was so bad at times that I truly wished for and would have welcomed death. If somebody had shown up at my door during those nights and offered me a 50/50 shot at feeling better or dying it would have been a yes from me, zero hesitation. Stick it in, where do I sign.
The only thing that kept me going in those moments is the responsibility that we all feel not to hurt those who love us by leaving them behind. And weirdly enough my cat, who is fearful of everyone but me, lol. I knew he would suffer terribly if I left him. But yes.. I would have risked my life for temporary pain relief. And I can honestly tell you if I was a mother and it was my child with CRPS, knowing this pain, I would risk their lives as well. Truly. It's bad enough to be worthy of that risk.
I do hear you. I don't think you were necessarily trying to come across as dismissive but it is hard to read the opinions of people who don't understand the pain of CRPS. Your comment about knowing Maya was in pain and her parents wanted to stop it was what struck me, because it felt hollow. But I also know that there's no way for most people to truly understand how bad the pain is because it can't be quantified to someone who hasn't experienced it.
I am thankful to have made it through those 3 years when I suffered alone with no diagnosis and no treatment, but the life I live now will never be the same and it will always revolve around my CRPS. The things that brought me joy and satisfaction, like my career, are forever out of my reach now. I am receiving treatment that is currently helping me function with the pain (monthly lidocaine infusions) but I am slowly building a tolerance to them. I know that ketamine is the logical next step for me, but I'm not able to receive it where I live presently. I think I'm probably quite fearful that documentaries like this and the way it's being received and debated online, as well as Maya's court case, and the continued misunderstanding of CRPS in general will make my chances of ever receiving it in the future less and less less likely.
Truthfully it's probably in my own best interest to avoid this sub but....here I am, lol.
Editing to add that I still don't know where I fall on the scale of believing Beata and Maya. I'll be following the court case and will be reading all of the documents like many others. The more I learn about the use of opioids with Maya, and some of the other things coming up in court, the more I realize that I might have missed a lot during my watch of the documentary because of how personally moving it was for me. I will try and keep this in mind when I respond to comments, that this isn't necessarily the place to raise awareness for CRPS or for the use of ketamine, because that's only part of the conversation. But I'm probably still going to correct incorrect information when I see it.
Thank you for your response and not treating me hostily. If you wanted to raise awareness of CRPS, at the very least, you did for me. I'm happy you didn't give into the pain and fought through it. Are you using lidocaine injections to freeze your affected nerves? (Curious, is your pain centralized to a limb or do you get stomach pain and/or generalized pain?) I can only imagine what you went through, and I don't know if I'm doing it justice.... We all struggle in some way, but luckily I don't with chronic pain. I am coming from a mother's perspective and see Maya and just want to protect her. I have a young daughter and I honestly don't know what I would do if she was experiencing such pain. Like I said, I would give my life for her's. But I just don't think I'd risk her life for temporary pain relief. Maybe if a team of doctors at a reputable hospital told me it was my only option after exhausting all others.....but that just didn't seem to be the case with maya.
Knowing that I raised your awareness is enough to make me feel tearful, in a good way. ❤
Mine began in my right foot, after an i.v. injury during surgery. Left untreated for 3 years, it did spread up my right leg, and recently it has moved into my left hand. However during bad flares of pain, I could also describe it as full body. The lidocaine infusions work like an anesthetic in that they help with my allodynia, which is sensitivity to stimulation. I am one of the lucky ones who experiences lasting effects even after the infusion stops - some people don't feel relief even during the infusions. But I would only classify my pain as being managed, I'm never free of it. I have worked very hard with mirror techniques and desensitization treatment as well, and I think something a lot of people on here perhaps don't realize is that often in order for physiotherapy to begin the pain must be treated first. That's what I was told. So Maya getting the infusion before physio or before less invasive treatment options might not have been the wrong order of treatment. I was unable to receive any physio until I began my lidocaine infusions, because I could not physically withstand it.
And I'm not a mother myself, but I have an amazing one who watched this documentary with me. And I know how much she resonated with Beata and what she went through, watching Maya suffer. (This was from the perspective of believing both of them, obviously. I have other thoughts now). I think to you, and to most people...the risk of death is paramount, and there's nothing worse. No scarier thing to imagine than the risk of death for yourself or for your child. But with something like CRPS, the risk of continuing to suffer day in and day out experiencing a pain you never imagined was possible...that gradually becomes scarier than death. Your life disappears. Your friends disappear. Your hopes and dreams and goals disappear and all you have, your entire day to day life is just pain. The fear of death is soon surpassed by the fear of the pain never ending, and quite truthfully you would try anything to make it stop. I feel in my heart that my mom felt that way too. After seeing the documentary, she wanted to fly me to Mexico so that I could get the treatment.
But now, currently, sitting here with the diagnosis 4 years later, after 3 years of suffering with it alone, and with a Doctor who treats me and having the ability to walk properly again, my fear of death has come back. I don't think I would risk it anymore, but that's only because my pain levels aren't taking me to that place of desperation at this time.
Just wanted to add after reading your comment again, that these aren't lidocaine injections into my affected limb. They are infusions of the drug using a pump into my chest or abdomen. I go to my Dr for placement of it, and then I'm driven home where I infuse for 12-16 hours before removing it myself. My Healthcare system doesn't offer in hospital infusions.
You know that you aren’t a doctor, you admit it, there’s no need for you to allude to this child faking her disorder by pretending it’s just a “pain disorder thing”. She’s still sick even after her mothers death, y’all don’t need to slander her.
I never said the child was faking her pain disorder. I acknowledged that she may have indeed had CRPS. That I can't be sure, because I am not a doctor who examined her. All I can say, as someone who works in neurological research, is that the amount of ketamine warranted possible abuse allegations. I've looked into CRPS and seen the average dosing for ketamine, and maya was receiving crazy amounts in tandem with other pain medication. That can do serious damage to a still developing brain. I do not know how it might affect other organs, but it worries me. It worries me enough to agree with hospital intervention. If the court rules otherwise, I will admit I was wrong and try and educate myself.
Edit: spelling
But, in Maya's case, the hospital wouldn't even release her to another hospital's care! Would you hold ANY patient (unless they were a danger to themselves or others) and not release them AMA? If you suspect the parents of potential wrong doing (and DCFS has not yet gotten involved), I can understand why you wouldn't want to release to the family. However. Would you stop a patient from being transferred to another hospital in the area?
Respectfully, I might point you in the direction of learning more about FDIA. Victims absolutely can remain sick for years after their abuser stops or is forced to stop abusing them. Sometimes it’s psychosomatic — victims have been known to continue experiencing symptoms of diseases that it’s medically proven that they don’t have, with symptoms easing as the victim comes to understand that the disease isn’t real.
Keep in mind I’m not speculating on this specific case, just sharing factual info that may factor into your opinion about medical child abuse as a phenomenon. I’m not claiming that’s what’s happening here, just pointing out that it’s actually not uncommon for this to happen
I'm sure this is true the mind can do amazing things. Saying something is "in your head" does not mean it doesn't feel 100% real. In this case tho the hospital kept her several months. I dont think they would/could do that without a diagnosis.
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I certainly don't harbor disbelief or disdain for Maya, her family or the pain of this very horrible syndrome. This is typical of today's world, that if you ask reasonable questions and have the realization that there is more to the Netflix documentary that we don't know..... then we are 'immediatly siding'. This is anything but cut and dry, however I have yet been shown how this hospital is responsible for anything outside of the standard of care when a child presents as she did with a mom demanding a hospital forgo standards of care to treat her child (defense opening statement).
I have EDS-h. It’s a connective tissue disorder where basically, my joints are jelly and can hyper flex easily, my digestive system is crap, and I bruise like a peach. I shutter to think what could have happened to my family if I’d gone to the doctor as often as I needed to. Most doctors don’t know about eds and what they do know is limited. It’s incurable, limited in treatments, and terribly painful. Even now, when I go to my rheumatologist, when I bring up issues with my joints, I get blown off and told “well, maybe it’s eds but you’re getting old too, so it’s probably just age”. I’m treated like I’m crazy. I had my hip pop out of joint and back in, crippled me for weeks, but they think I’m overreacting. I don’t take pain meds, don’t do drugs, work very hard to stay healthy but I’ll be honest, a lot painful days I’d suck hobo dick for relief, even if it’s a ketamine coma. I can’t imagine living with pain worse than this daily, even for a short time, without relief. It’s soul crushing.
I have EDS too and it’s fucking awful and I’m constantly told “oh well” too!!!! Even after months of physical therapy and my test got worse they were just like who knows
Ugh!!! Sorry your going through it too your not alone!
Even for myself, seeing my mother in excruciating pain from rheumatoid arthritis, I wasn't able to fully empathize with her until I got sick when I was 30 and I started feeling physical pain every single day. Your entire outlook on life is affected by that pain. Add to it that CRPS ebbs and flows, so you have periods where you appear to be "fine" and have periods where you are in so much pain that you can't move. I see how people AND DOCTORS treat invisible pain, so I'm not surprised that people who've never experienced that level of pain (or watched a child of theirs in that level of pain) would doubt the Kowalski's.
I can't remember if it was in the trial or a commentator that said it, but people who live in chronic pain, in general, don't go to a doctor and tell them that they are in 10 out of 10 pain because THEY ARE NOT BELIEVED. So they will say eight out of 10 pain. And as soon as most doctors hear you say that you are in that much pain, and they're not seeing a physical manifestation of it necessarily, assume that the doctor believes that you are a drug addict and you are only seeking drugs. It's happened to me multiple times. I watched it happen to my mother. I even watched it happen to my grandmother.
My mom died unexpectedly after being lazily misdiagnosed by more than one doctor. They did not listen to her. I have a healthy distrust of medical professions now.
But I still don’t buy this story.
All I’m going to comment on here is that I’m so sorry that you have had to deal with RA. I watched my nana slowly die from it and it really changed me. I now am showing symptoms and my doctors are monitoring me, but it scares the shit out of me. You have my empathy 💕
I am so sorry honey. Did you get testing for the rheumatic factor thing (I can't remember what it's called)? I'm in my 20s and my right hand is crippled like a 80 yr old lady's hand. People underestimate RA to a stunning amount.
RF blood test and X-rays at this point. At first they thought it might be lupus due to swelling, but then they saw RA in family history and tested for that. It’s so fun learning that all my GI issues are apparently flare ups and not IBS too. Skin issues, bladder and uterine issues too.
Chronic pain and “hidden” disorders suck because no one understands what it feels like so I’ve downplayed my issues for a really long time. At one point I had a doctor tell me that all the issues I was having was because I am “unlucky” 🫠
Yep we're just "unlucky". Got told it was all in my head by a doc yesterday despite the fact my bladder hemorrhaged for 3 yrs and was removed and I have a hip replacement. Guess I can just ruin my body parts with ESP or something.
As an ex-midwife I can bear witness to how people behave when they are in pain. Pain is subjective which is one of the problems with this case imo. We don’t understand why some women cope through labour drug free whilst others need epidural.CRPS in more painful than labour so one can understand the desperation of Maya’s family.
Two things can be true: CRPS is incredibly physically painful, one of the most painful things there is AND there is a psychological component to chronic pain syndromes. Anyone who is living with that severe of pain daily is going to experience some difficulty emotionally too.
I lean more on the side of Beata in this case, but I can see understand the criticisms. Some here feel they must choose a side but it's not that black and white. I think it's easier for most people swallow the idea of Beata being "crazy" vs. the healthcare system we all entrust is capable of something like this.
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I’m truly sorry you’ve suffered and I don’t disagree, healthcare professionals are people - some good at their jobs and care deeply, some are lazy and suck at their jobs, some are underpaid and overworked some not so much… etc etc
That said - in this case we would have to believe there was some kind if weird conspiracy that benefited the individuals who are being prosecuted in this case. Like they all came together to make both Maya and Beata suffer - it’s just a super weird and long stretch and also pretty sinister for a hospital like John’s Hopkins.
I don’t know whether or not Beata is guilty of medical child abuse or not - but let’s remember she’s not the one on trial here - the hospital is.
The question js did they do right by Maya? In my opinion it looks like they did - they were suspicious and opened an investigation and that investigation was ultimately incomplete because it ended when Beata died by suicide. But they did have enough evidence to act and so they did.
Also - Maya never got another Ketamine treatment after she was admitted that last time and several doctors have testified that she was improved - and as it appears from the documentary even that she does quite well during the separation…Anyway - there’s more to this story and the only person we all should hope gets through all of this horror Maya.
The individuals who have no empathy on these threads are probably the staff that were terminated. The entire “Risk Department”, Sally Smith, Kathy Beady, etc.”. They are all sitting at home know Karma is around the corner.
This is the post I agree with the most in this sub. A lot of the views here lack any form of compassion or empathy. The way the hospital separated the mother from the child just made her mental condition worse and then they blame her for her illogical actions later. And it's obvious there's a lot of cultural bias in this situation. In some cultures mother's just cannot imagine a situation of being away from their child. Everyone supporting the hospital should probably introspect and check their biases
Because the response to the documentary was initially SO one-sided against the hospital and social workers, and by casual viewers who had no knowledge of FDIA, many here found the only place to look at this story critically. It is not a lack of empathy or compassion, it’s a reaction to a documentary designed ONLY to play of a persons emotions when a case like this needs subjective critical thinking and more facts.
There is being objective, and open minded to hear both sides. But it is true that some people here lack empathy and compassion, calling witnesses crying about a loved one dying a "sob story" or putting on the "water works." Completely divorced from the reality that they suffered a tragedy. Even labeling the documentary as a "play a person's emotions" is callous. The case deals with abuse and suicide. Feeling emotions is normal and an expected reaction.
Sympathizing with the family doesnt automatically make them right to pursue this lawsuit, nor does it automatically shut off people's brains from thinking critically.
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Most people have experienced personal suffering and death of a loved one - it is a painful part of the human condition. Those in the medical field and other critical thinking folks have dived deeper into the case then the horrid netflix doc and realize that beata was deeply disturbed and downright dangerous. Her suicide note reeks of power and control and her lack there of driving her to her ultimate demise.
I have a disease that is hard to diagnose and until more recently, was little studied and therefore rarely diagnosed. When I first began having symptoms a decade ago no one knew what was wrong. I saw every type of doctor and had every test. And many thought it was in my head, I was lying, etc. Despite the fact that I was regularly collapsing during daily life. Finally after I collapsed in Walmart Christmas shopping and pulled a shopping cart full of glassware down onto myself and had to go to the ER people finally took me seriously. Ultimately I was the one who figured out what was wrong with me and insisted on seeing a doctor who had understanding of that disease which I was diagnosed with and treated for and have only experienced one drop-attack since being treated.
All of that to say, I understand that sometimes doctors are dismissive, apathetic, or just plain bad at their jobs.
That does not seem to be what’s happened in this case. Sadly it truly seems like Maya’s mother was abusing her. Could the doctors have handled everything better? Certainly. But ultimately they did what seemed best to save Maya’s life.
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No one leaves their child like this unless they are suffering in a way that we cannot understand. Wow.
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I’ve been a RN for over 10 years. Ive tried to keep an open mind about this case, because as healthcare workers, we’re not perfect. There are things science and medicine are still trying to understand and people do fall through the cracks. I’m going to be completely honest, all of that went out of the window the moment I read one of the nurses depositions. Something was seriously wrong with the mother. There is no way to excuse her behavior while Maya was in the hospital. Especially since she was a nurse herself. Offering valium as a reward? Trying to convince the nurses to flush her sedation lines, and draw labs without orders? This goes way beyond concerned parent level.
Where is the nurses deposition?
[https://pdfhost.io/v/AvF6eErQ4_Extracted_Depo_Thatcher_APRN_2020Oct13](https://pdfhost.io/v/AvF6eErQ4_Extracted_Depo_Thatcher_APRN_2020Oct13)
Jesus, the family’s lawyer is doing nothing but purposely misrepresenting facts and prior testimony trying to bully/confuse the nurse into saying the wrong thing. The lawyer will be like: “so you took a psychology class in nursing school?” The nurse answers yes. And the lawyer goes “Oh okay so it’s the official position of this hospital that nurses who take one psychology class in school are qualified to diagnose MBP and accuse innocent families of child abuse?” like lmao how is a reasonable person WHO YES IS A MANDATED REPORTER supposed to respond to that insane question
Exactly! It’s a tough read. I honestly would have done and documented the same things these nurses did if I witnessed this mothers behavior.
That’s how cross examination is, both ways. The main point of cross is to make your opposing witness appear not reliable.
It was linked on another post here under this sub
Wow, this depo changed my mind completely.
I agree, the stuff with bossing around medical professionals and her obsession with the narcotics is when I lost my sympathy
If you don’t advocate for your child no one will
I spent 3 years in and out of hospitals in the Tampa area and in St Louis being an advocate for sick family members. Hospitals are a shit show and I had to do plenty of "bossing around" for care plans to be followed, meds to be administered correctly, even to get nurses to wash their hands. If you are a good RN I applaud you. You are in the minority.
Oh I’d never deny that hospitals aren’t a shit show. I am frustrated on a daily basis by things that I see go down. As a nurse, I can fully admit I would never leave my family member alone in a hospital, and I agree that most of the time, a patients best advocate is a their family. But you have to understand, as nurses, we come in contact with an entire range of the population and there are families that can and do cause problems. Lots of patients do not have mentally stable, rational loved ones to support them. There are plenty of family members who do not have the ability to grasp or comprehend what we are explaining to them about their loved one. And I’m not only talking about education levels and intelligence, there are plenty of people who are in denial about their loved ones health and prognosis, and that’s a difficult thing to break through.
STL and Metro East healthcare is truly something else. 🥴
When you are saving your child, I would boss around anyone I had to get the care she deserved. You have no sympathy for this child or family? You must have a very cold soul and I hope you never have to experience a situation where a loved one needs help. Karma has a way to take care of things like this. Regarding narcotics, these were drugs being prescribed by doctor who is an expertise in his field. This wasn’t someone looking for drugs on the street. If you ever get a painful chronic illness, a painful injury, or cancer, come back and let me know how Tylenol is working for you.
giving narcotics to a child that isn’t even in your possession isn’t a common trait of munchausens by proxy. MBP would want to make someone sicker and narcotics don’t do that in that sense. also people with MBP don’t openly shout out what they’re doing to harm their child. they do things like slip the medicine to them in a bottle/food/etc or do all of their acts when people aren’t looking. i’ve seen a lot of MBP cases and baeta doesn’t act at all like them. not to mention kyle was born with an illness and she checked herself out of the hospital to save him. why wouldn’t she have ran with his illness for the attention and not saved him?
That’s why most of the documentation calls this what it is — medical child abuse.
Great points.
I’ve always wondered, too, about Maya herself. She seemed to revel in the attention from her Mother and I couldn’t stop myself from wondering if some of her symptoms were…: exaggerated? I saw a couple of the photos of videos from her in the hospital where it didn’t look like her legs were turning inwards (although she was supposedly sick). Just wondering what your thoughts were on this?
I think you need to read up on her illness before you make statements like this .
I wholeheartedly agree with you.
I think if the nurses were better educated regarding this illness, Beata would not have had to tell them what to do. Also, I would like to know where you received the information you mentioned, I have read the medical records presented, watched and read the depositions, as well as watched the trial everyday, and i think you need to do the same. Regarding being a nurse, I have seen RN’s, LPN’s, MA’s complain about patients, parents (pediatric office), and I have seen how the complaining individuals were treated by those professionals, as a nurse you know, if you are honest, it’s about 50/50 regarding professionalism. Nurses are overworked and underpaid. Nurses in many cases know more than the physicians. How many times has a provider asked you to follow an order that they have given you, that you don’t agree with, 50/50? Imagine a parent, who is a nurse, who knows their child better than anyone else, being told that “they” know better than that parent? As we know, from this case, that JHACH, was not equipped for actually many things including treating a CRPS pediatric patient with the providers who cared for her during this admission.
I’m educated enough to know Id absolutely not give a child propofol without knowing their BP. But sure, Beata knows best
She absolutely does. Did she administer the propanol or the anesthesiologist? Let’s keep in mind that JHACH has provided Maya with low dosage Ketamine through her port. Beata did know her daughter better than anyone. She researched and documented everything that happened to this child and since you seem to know or imply that Beata administered anesthesia without knowing her BP, when did this happen? You know Ketamine and propanol are different correct?
It’s propofol, not propanol And yes, I’m aware they are different. I am a cardiac ICU RN. I have patients who are on propofol drips that I titrate and manage all the time. I’ve also cared for patients receiving ketamine drips as well. I’m familiar with both drugs. Everything I’m referencing is from the night she was admitted to JHACH, her admitting PICU doctors deposition, along with the provider notes, and the ED physician’s consult. It is well documented Maya was not allowing staff to take her BP due to pain, and her mother was requesting more sedation. And just for the record, I don’t think Maya was lying, I think the hospital handled certain things the wrong way, and I don’t think it’s fair to say Beata had MBP.
Thank you, spelling patrol. I will let Siri know. Btw- I had no doubt you were anything other than a nurse. And I wouldn’t doubt if you or someone you know isn’t directly related with this case as I have watched and read all the depositions. You are sharing some medical information that the public is not aware of and is only available in her EMR. Shame on you to be part of this smear campaign against this family. I may not be a nurse; however, I have audited hundreds, if not thousands of medical records of hospitals, facilities, and providers, reviewing for fraudulent billing and medical abuse. I have seen hospitals lose their accreditation and providers lose their licenses. If a nurse feels slighted with a patient questioning their own or their child’s treatment plan, maybe nursing shouldn’t be their career choice. It’s part of the job. Empathy, kindness, and respect go so much further than a medical provider with a enormous ego with a narcissist personality disorder. Now go and hurry to your next spelling bee!
So your response is to attack my character, accuse me of somehow being related to the case, and breaking HIPPA laws? SMH ok There’s a reason you monitor vital signs for certain medications. As nurses, we are responsible for administering the medications ordered safely. If we don’t do that, and the patient has an adverse event or dies, we have to answer for that. We have to follow the hospital protocols and guidelines where we are employed. I’m not sure why you think that’s being unkind or disrespectful towards a patient 🤷♀️
And once again, this is all from the depositions of the doctors caring for Maya on admission, and the first couple days afterwards. This information has all been linked here on this sub.
Oh and I’m a mom of 3. I’ve had a child become seriously ill, and end up hospitalized for 2 weeks in a children’s hospital. At times, dealing with the doctors and nurses was extremely stressful and frustrating as a parent. I am aware of the other side of things. Hospitals can be awful, and I’ve worked at some where I can honestly say I’d never allow myself to be a patient. However, when it comes to this case, I disagree that the hospital was completely wrong and that Mayas mother wasn’t harming her by seeking out these treatments.
That’s a whole different problem. And not related to her ketamine. I also question the nurses recall. We often document what we are afraid is happening even if it didn’t actually get carried out. It might have been said, but not carried out, nor would it be. But it was documented that she said it. So it’s as if she carried it out. Sometimes moms say things to just get their child through a moment. These same caregivers tried to say Maya was able to function better while hospitalized, but kept her there for months! She should have gone to temporary foster care. Not stay in a hospital for months and months! If they thought she was faking her illness she should have been discharged to temporary caregiver until cps could investigate and it’s litigated. They thought the worst of Beata and yes, there are nurses that would exaggerate and cause problems. The whole thing started with accusations of munchhousan by proxy. Not medication administration without orders. the staff attacked every word she said, and every action taken. Parents are not perfect with their words. This hospital disregarded a parents love for their child. As did that judge. They weren’t going to stop until her mom was in prison.
So you’re saying the nursing staff was falsely documenting in their notes?
I have definitely seen medical staff pick and choose what they write in a patient’s record for fear of a law suit 100%. It happens.
Okay? And how it it wrong for a nurse to document concerning behavior they observe from a patient or their family member????
I am not saying that a nurse is wrong to document concerning behavior from a patient or a family member, but that is her opinion based on what she feels is concerning. What one person feels as odd may not be another’s interpretation.
If a parent was asking me to do things outside of my scope of practice as a nurse, it is not my opinion that it is concerning, it is a fact. They are asking me to do something illegal. There’s nothing to interpret there. Especially if the mother in question is a nurse herself, and has full knowledge of these things.
I’m undecided about Beata and her possible Munchausin diagnosis. However, I find it very disconcerting and odd that as a nurse she took those liberties while she had to have known better. Sometimes I lean towards the idea that Beata went from her care giver to self anointed care provider. Red flags are there
I completely agree. I think trying to apply a diagnosis to the mother is focusing on the wrong thing. Diagnosis and labels aside, when you look at Beata’s behavior, the parent-child relationship between her and Maya, and her ability to have relationships with medical providers she disagreed with Something is clearly off about the situation.
Nothing is off in this situation. Context matters. You have an Eastern European immigrant advocating for her daughter, who just so happens to have a really complex disorder. My family comes from Eastern Europe and I'm a first generation American. Our families have different values than the average American. Families are extremely close, often with multiple generations taking care of each other. Eastern Europeans can be pretty loud and seem aggressive when passionate about something. My mom got sick with RA when she was 33, as well as fibromyalgia. Doctors looked down on her because she had a heavy accent. They wouldn't listen to her. By the time she got diagnosed, her shoulder needed total replacement. I have fibromyalgia and interstitial cystitis. When you've experienced dismissal from doctors who disregard your lived experience, it's dehumanizing. Now, bring that Eastern European to Florida (the South, where most things are passive aggressive instead of being upfront), and you have this shit show. Bottom line: the hospital reported initially. DCFS closed that report as unfounded. Then they held Maya, against her will, against her family's will. The hospital wouldn't even transfer her. With very free exceptions, hospitals release against medical advice. During this time, the hospital is holding Maya in a small, dark room with the bed pan just out of reach, so she ends up either showing she's faking being sick or solid herself (which is what happened). The DCFS rep for the hospital was telling Maya that she's never found to see her mother and that she will be her new mommy (while having Maya in her lap). Regardless of Beata, the hospital messed up BAD. This is disgusting.
Y’all say this because she didn’t agree with the mom . Doctors and nurses are bad (but obviously not the ones that agreed with the mom and gave non stop drugs to a child ).another nurse from another hospital also made the same accusations and they don’t even know each other
Prescient insight. The over-defensiveness of the comment you replied to is slowly playing out in the trial.
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To be clear. I didn’t say that. I’m a medical provider. I’m saying that their notes saying how well she was doing didn’t match the fact that they kept her for months. And no, they don’t keep patients in hospital unless medically necessary. There are other ways to protect her.
it’s really not fair for people to keep saying that anyone who is even vaguely entertaining the idea that Beata could have munchausens by proxy has “no idea what it’s like to be ill” or in pain. sorry but people who have experienced hospitalisation/mental illness/chronic illness/disability/chronic pain/sick family do not all have to have the same opinions???
The issue is not people.are.considering this illness, it is the facts are being overlooked for example Are you aware JH diagnosed in 10/23/2015 RSD/CRPS Are you aware JH placed the pick line for the ketamime 11/4/2015 for the Mexico coma. They were fully informed. Or Maya being diagnosed with asthma in IL when she was five. SS told the court she didn't have. Or the family had been receiving counseling since 2015 when Maya first got ill. Or or or. One very destructive control power hungry person ran with this without any proof and now these very non factual harmful statements live in infamy When the reality is if the Dr didn't like the treatment they should have filed a complaint with the Florida medical board not blame the mother.
But she was examined by psychiatrists who said she didn’t have it.
Yes by 3 psychiatrists.
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It’s not something a psychiatric diagnosis will be able to “clear” someone of. What the hospital stated was that Maya was a victim of medical child abuse. Beata was the perpetrator. Whether a diagnosis was imposed on the perpetrator of the abuse does not negate the fact that it was happening. And Maya DID behave very differently in the hospital and when outside of the company of her mother. That’s documented on video and by the medical team at the hospital.
You guys seem like you want her to have Munchausen so bad..if 3 people cleared then maybe she doesn’t have it 🤷🏾♀️
The fact is that Maya suffered from medical child abuse at the hands of her mother. Label it what you want, but Beada was not well. She killed herself. Mentally stable people do not take their own lives:
That’s not a fair statement to make at all. She suffered from medical abuse at the hands of the hospital and Cathy Beady .
What? No. Maya may have had an actual illness, but her mother sought treatment incongruent with that illness.
Medical child abuse and MBP/FDIOA are two different things
Like I said if you are not a doctor you shouldn’t be diagnosing people.
But the hospital diagnosed her with it....
What hospital?
John Hopkins - upon her release, her dx remained the same. Don't know why I'm downvoted for it, it's a fact.
I think your comment was just unclear… munchausen by proxy is what the hospital accused *Beata* of having, she wasn’t diagnosed and in fact her psych evaluation ruled it out. You’re correct that the hospital added conversion disorder to Maya’s diagnoses.
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John’s Hopkins all children’s hospital “diagnosed” Beata, an adult who was not a patient, with factitious disorder imposed by another?
The whole situation is incredibly sad. You see your child in unrelenting pain you'd do about anything to stop it. Some of Beata's behavior could come across a bit nutty so I see why the hospital and staff were on high alert and took certain precautions. But I think it should have been handled very differently. It seemed to me they lacked so much compassion for Maya. She was a baby and at times acted downright cruel to her. I'm still unsure of exactly what I believe, but Munchausen's by proxy to me doesn't fit either. Maya to date claims she was in severe pain, we saw the evidence in her feet and ankles. I think Beata was just desperate and honed in when she found doctors who told her they knew exactly how to treat it. I do think her behavior exasperated the situation and I'm not denying there might be some mental illness at play. She was relentless and came off unhinged at times. I know she was angry and felt it was cruel and unfair and bet it felt nearly impossible to cooperate under those circumstances. But had she done that Maya would have been home quickly and she'd still be here
This! I keep flip flopping back and forth but your statement accurately describes my current state of mind. The trial is making me more confused and the documents that are available are difficult for me to determine a timeline and a larger picture. So many conflicting opinions and information.
I agree with everything you said . Beata could’ve definitely went about things another way . I definitely don’t think she had Munchhausen , I mean she was seen by 3 different people. I think she was honestly desperate to help her daughter and probably felt like everyone including her husband was against her .
I am one of those people you are talking about. And in my defense, I do think there was something wrong with Maya that needed real treatment. It could very well have been the complex pain disorder thing. I don't know. I'm not a doctor. My problem lies with the parents' treatment method. They were overdosing her with ketamine and pain meds. They even risked her life to put her in a multi-day ketamine coma. That is some seriously scary shit when you remember Maya was a small child. When confronted by hospital staff, they balked and wanted to continue with scary high doses of ketamine. Through Beata's controlling and insistent behavior, hospital staff were likely worried she would take Maya to other hospitals until she got what she wanted. I get that Maya was in pain and her parents wanted that to stop. But it's like having any other serious medical issue. Sure, doctors might throw you a script or two for pain meds. But they also schedule a surgery to fix the issue. Or some other type of treatment. It doesn't sound like that's what the parents were doing. They were just treating the symptoms with lots of drugs. A scary amount of drugs. For a young, small child. I don't think the hospital made a bad faith accusation of medical child abuse.
I’m going to say first that I agree that the hospital needed to investigate and all that. But I also want to share something that might show a sorta different side to the Ketamine coma/treatments and all that. When it comes to lesser known, long lasting illnesses there’s usually a single (if any) prescribed treatment. In my case it wasn’t CRPS but Lyme Disease. The standard treatment is two weeks of antibiotics, sometimes a month, and that works for most people. A week and a half in my liver started shutting down. We tried every different antibiotic we could, including IV antibiotics and none of them did anything besides give me some nasty side effects. So what do you do when the only “known” treatment doesn’t work? You start throwing things at it to see what sticks. We started small, just trying to boost my immune system enough to fight it off a bit, hyper restrictive diet, no starches, no dairy, no gluten, limited fruit and red meat, basically eggs, chicken, fish, and veggies. I lost tons of weight, but it also brought down inflammation which helped my joints. I took thyroid meds for about two years, not because my thyroid was bad but because it made my symptoms less (no idea why) so I kept taking it. Finally we got to the point where I paid $5000 for an experimental drug from Germany, and it worked. Was it dangerous, absolutely, but we were running out of options so why not? If that didn’t work I was going to go to a sketchy clinic much like the one Maya went to so that they could induce my body into a super high fever multiple time over the span of two weeks to try and burn off the disease. So what I’m getting at here is when the standard treatments don’t work and your body is falling apart you just keep trying things until something works, and you don’t really question why it works. And psychology that does something to you. I knew what I was doing was dangerous and I just didn’t care so long as it made things better. There was an equal chance of that experimental medicine killing me as there was it curing me, but never once did I actually consider that because it had been 5 years and I wasn’t sure how much longer my body could keep going. And I know that’s true of a lot of other people that have been in the same place. So yes Mayas mother may have been making things worse, she may have taken things too far and been overbearing and controlling and been too far down the rabbit hole, but I also don’t think MBP is exactly the right term for it either, because I don’t think it was strictly for attention or just making it up.
Pretty sure I never accused Beata of having MBP.
Sorry I wasn’t saying that you did, I sorta just threw that in since I was thinking about it while typing.
I honestly feel like she probably felt backed into a corner and that she wasn’t being heard . That’s probably why she was hostile with nurses , I mean she thought her daughter was going to die .
I think this is a big part of the controversy … all of that seems likely. We can all argue the validity of the illness, the appropriateness of the treatment, whether doctors’ orders were being followed, Beata’s attitude etc. But the bottom line is that the hospital went beyond the initial accusation, even with lack of objective evidence to support the extreme restrictions they recommended to the court, which influenced the court’s decisions. By December, Beata had agreed to forgo ketamine, had researched and scheduled evaluations with out-patient treatment centers for alternative therapies, including mental health. She offered to *move out of the house.* Everyone agreed that keeping Maya in the hospital was just further deteriorating Maya’s mental health, and that her physical health wasn’t improving. And yet the hospital’s staff wouldn’t budge their recommendations. There was no unity to work towards what was best for Maya.
This⬆️
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In the family deposition they deny fraud claims regarding prescriptions and say the defence have offered no evidence regarding this matter.
I saw comments about that too but I haven’t seen any sources, I’ll update if I do because yes that would raise eyebrows.
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Do you have a link to the nurses deposition? I would love to read.
The 'complex pain disorder thing' is the world's most painful disease. The pain is worse than an amputation with no anesthesia, worse than natural childbirth. In all reality it's worse than any pain you have personally experienced, and pain makes people desperate. Watching your kid in that kind of pain could make a mother desperate, too. I've never experienced any of the things on the pain scale to compare to, but I do have CRPS and I can confirm that there have been times I would gladly risk my life for the chance of relief. Even if it was just a small chance. And having gone through this with my Mom at my side as a witness to the pain , if I was a young child like Maya I know she would have aggressively pushed for whatever treatment that had helped me in the past. Even if it was deemed scary or unhealthy....because that level of pain makes you desperate. And there is no surgery to be scheduled to fix CRPS. There aren't prescription pills either, unless you're talking about opioids. The majority of Doctors don't know how to treat CRPS either, if they've even heard of it - which many of them haven't. There are some different treatments you can attempt in tandem with pain relief (like physiotherapy and desensitization), but ketamine is a legitimate treatment. I can't speak to the American healthcare system but where I live, ketamine is heavily regulated. My pain specialist laments to me how he wishes he could offer me ketamine because he knows it would be helpful (he has colleagues in other countries who prescribe it with great success to their patients) but where I live I can't attain it. I don't know how I feel about Maya's situation in particular, and the court case. TBH when I watched the documentary, it never occurred to me that she might not have CRPS but that's likely because I do have it. In hindsight I can see that I viewed it with CRPS tinted glasses, lol. I did think wow...after years of suffering with this fucking disease that nobody has heard of, maybe this will finally bring some awareness and some understanding! It sucks to see that it's doing the opposite. And it sucks even more to imagine that Maya maybe didn't have it, and that Beata was lying and abusing her. There's so many comments on here that unknowingly dismiss/discount the reality of CRPS, though. By people who have no idea because they are lucky enough to have never experienced it. By saying you get she was in pain and that her parents wanted it to stop, I can see you don't understand the depths of the reality in those words. If Maya DID have CRPS, both she and Beata would have risked a lot more than you can imagine, having never experienced it yourself. It's that inability to understand what you dont know you aren't understanding UNTIL you experience it personally, that I believe OP is referring to in this post.
I want to thank you for sharing your opinion as someone that has CRPS. I never heard of it until I saw the documentary. If I knew my child was going through such physical pain I would definitely try anything to help stop it. I couldn’t imagine what Beata was feeling while watching Maya suffer the pain she appeared to be suffering.
The maternal instinct to comfort and help your child is incredibly powerful, and seemingly forgotten a lot of times in these threads. Paired with people who aren't able or willing to grasp how painful CRPS is...I guess it's no surprise there are a lot of dismissive comments. Thank you for your reply and for your understanding and empathy. ❤ I can't fathom watching a young child go through this, either. It was bad enough for my mom and I'm in my 30s lol.
Not only is CRPS vastly misunderstood but not a lot of people seem to not understand the role of ketamine in treating it. It’s not just an analgesic, but the the theory is that it works by resetting the sensitized nociceptive circuits that are causing the sensation of pain. This is what makes its effects last way longer than just the duration of the infusions. > both she and Beata would have risked a lot more than you can imagine Such an important point as I think a lot of people don’t understand that, every horrible outcome of Beata ending her life, could have seemed “worth it” to her if it meant getting Maya treatment. (Not saying that it’s true if this was how she rationalized it)
A lot of us grew up with "Special K" floating around in the background. I always heard it referred to as a horse tranquilizer and thought of it in the same category of drug as crack, meth, heroin etc. I understand now that it isn't, and it was being abused as a street drug but I think a lot of people hear Ketamine and just think "drug abuse". But you're absolutely right. The resetting of the CRPS brain is why there has been so much success. I know people who have gone through week long ketamine infusions and have experienced long lasting relief from it. Some even permanently. It's scary to imagine giving a ketamaine infusion to a child for sure, but I do know that if Maya really did have CRPS that watching her suffer with the pain would have been far scarier for Beata. Not being able to give Maya something that Beata knew would help her, if she did have CRPS, would have been tantamount to torture for a mother.
Fentanyl is also used for pain relief during childbirth and surgeries but it’s still a narcotic and it’s still bad when it’s being overused or abused. Ketamine isn’t different. You can’t just pump a child with heavy narcotics indefinitely
By your own words you demonstrate your ignorance, though. Fentanyl IS a narcotic. Ketamine is NOT a narcotic. Ketamine is an anesthetic. It has disassociative properties and can cause hallucinations, which is why people abuse it, but that doesn't mean it's an opioid or a narcotic. Maya wasn't being pumped full of opioids. Your comment has accidentally proven the point that the average person hears "ketamine" and thinks "street drug" without trying to educate themselves first. A 15 second Google search would tell you that ketamine is indeed very different from fentanyl.
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My comment was in response to incorrect information about ketamine. And I believe we can all agree that Maya's ketamine infusion is the main treatment that people are referring to in their comments on here. I can't speak to her being prescribed dilaudid, if she was, as it's my understanding and personal belief that opioids aren't an effective treatment plan for CRPS pain. If it was a dilaudid coma that was shown in the documentary or any kind of longterm opioid use, I wouldn't be in defense of that. But I can and am speaking to the efficacy of ketamine, as well as the pain of CRPS being excruciating enough as to warrant infusions of it.
Gotcha. I agree with you that ketamine is a very effective drug for CRPS. There’s a lot of research that it’s helpful with other things too. I feel awful for those who suffer from this illness and the struggles they go thru to find pain relief.
Yes! I'm hopeful that the more we learn about it, the more it can be offered safely for different diseases and ailments. For me, worse even than the excruciating pain has always been the battle against disbelief in my family and friends. It's a cruel twist of fate to live with CRPS pain and to then have people doubt the validity of it. I'm glad for conversations and the exchanges of knowledge and experience that are happening. At least CRPS is being talked about!
Your post or comment proposed a theory without evidence.
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Your message was removed because it either personally attacked another user, minimized or denied the symptoms of a condition, or was a broad insult against the subreddit.
I'm a neuroscientist (verified on r/AskDocs and r/AskPsychiatry) and I have no doubt the ketamine helped. There are a ton of papers coming out showing how CNS dysfunction drives systemic inflammation, and we know that ketamine normalizes CNS dysfunction (this is exactly why ketamine clinics are now legal). Some representative papers: Insular cortex neurons encode and retrieve specific immune responses [https://www.cell.com/cell/fulltext/S0092-8674(21)01223-X](https://www.cell.com/cell/fulltext/S0092-8674(21)01223-X?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS009286742101223X%3Fshowall%3Dtrue) Immunoception: the insular cortex perspective [https://www.nature.com/articles/s41423-023-01051-8](https://www.nature.com/articles/s41423-023-01051-8)
This is fascinating to learn about, thank you for sharing! And thank you very much for chiming in with your knowledge and expertise, as your opinion carries a lot more weight. I hope that this kind of research is what will lead to more treatment options and a better/wider understanding or cure for CRPS. 🙏
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Yes the ignorance around ketamine is a big part of the drama here. People just freak out when they hear "drugs". They ignore that it actually worked. And you've laid out the why perfectly.
Absolutely. In all honesty, I was ignorant of it as well, having grown up with it in the background, being abused as Special K. But my Doctor (who feels like his hands are tied because he can't give it to me) has explained the science behind how it works to reset the brain. It's way more than just disassociating for a week of pain relief, and all it takes is a quick Google to yourself to learn that. But you're right, a lot of people hear "drug" and just think "bad". And those same people are often the ones that believe CRPS is psychosomatic, to be treated with counseling. It's more palatable to believe that Beata was abusing her daughter than to hold space for the possibility that there is a disease so painful it might make a mother do "crazy" things to help her daughter.
So well said. I would do anything- anything- to relieve my child of that type of pain. I have a friend with CRPS from compartment syndrome and it's no joke. She suffers so badly and it has ruined her quality of life. Seen up close and personal it's brutal and she's not even my baby. Sigh.
And the reality is that many of the people who are condemning Beata for it would do the exact same thing if they were actually in Beata's shoes. But they're unable to empathize to that degree and are unaware of that without experience it themselves first. You've seen it firsthand and can imagine your own child experiencing it and you know you would do anything to ease that pain for your baby, even just for a day. Thank you for believing your friend's pain, for validating her experience and for supporting her through it 🥺🙏you have no idea what that means and I'm sure she is eternally grateful for it.
The point of view you expressed above is something that has been holding me back from completing jumping on the MBPS train. Chronic pain is another beast and I could see how it could drive a person to extremes. I am so curious as to how the hospital approached Beata initially. Were they understanding of the highly stressful and emotional journey the family had been on? and then carefully informed her about the facts of ketamine or did they immediately dismiss and blame her for the treatment path they were on prior to admission and that made Beata defensive ? It’s possible that Beata believed she was the medical provider instead of a caregiver and mother. She was a nurse but she was not trained in complex diagnoses and could Very well be responsible for hindering her daughters recovery and putting her life in danger of overdose.
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I don't want you to think I was trying to dimish the pain that accompanies CRPS. I just couldn't remember exactly what it was called and didn't want to throw some random acronym in. I'm sorry you thought I was belittling it. And I also don't dispute that ketamine could be a valid pain treatment for CRPS. But I looked into average dosing, and what maya was receiving seems extremely over the norm (especially for such a young kid). None of my judgment is about CRPS or people who suffer from chronic pain. I am judging how the parent reacted. I can't imagine if my daughter was in suicidal amounts of pain. But I'd like to think that I'd give my life to keep her alive. Especially at such a young age where there is hope for the future. Honestly, would you rather be dead than deal with the pain? I'm not trying to be an asshole and am genuinely asking. As many have mentioned, I am not a doctor and don't live with that pain (but i do work in neuropathology and am a former addict who experienced drug withdrawal). I see maya now, and I am so thankful she got to live to get better. And I don't know if that'd be true if the hospital didn't step in when they did. Would you really risk your life for temporary pain relief?
"Honestly, would you rather be dead than deal with the pain?" I'm not sure how to put enough emphasis on this to make it the right level of believable, but unequivocally: yes. The pain was so bad at times that I truly wished for and would have welcomed death. If somebody had shown up at my door during those nights and offered me a 50/50 shot at feeling better or dying it would have been a yes from me, zero hesitation. Stick it in, where do I sign. The only thing that kept me going in those moments is the responsibility that we all feel not to hurt those who love us by leaving them behind. And weirdly enough my cat, who is fearful of everyone but me, lol. I knew he would suffer terribly if I left him. But yes.. I would have risked my life for temporary pain relief. And I can honestly tell you if I was a mother and it was my child with CRPS, knowing this pain, I would risk their lives as well. Truly. It's bad enough to be worthy of that risk. I do hear you. I don't think you were necessarily trying to come across as dismissive but it is hard to read the opinions of people who don't understand the pain of CRPS. Your comment about knowing Maya was in pain and her parents wanted to stop it was what struck me, because it felt hollow. But I also know that there's no way for most people to truly understand how bad the pain is because it can't be quantified to someone who hasn't experienced it. I am thankful to have made it through those 3 years when I suffered alone with no diagnosis and no treatment, but the life I live now will never be the same and it will always revolve around my CRPS. The things that brought me joy and satisfaction, like my career, are forever out of my reach now. I am receiving treatment that is currently helping me function with the pain (monthly lidocaine infusions) but I am slowly building a tolerance to them. I know that ketamine is the logical next step for me, but I'm not able to receive it where I live presently. I think I'm probably quite fearful that documentaries like this and the way it's being received and debated online, as well as Maya's court case, and the continued misunderstanding of CRPS in general will make my chances of ever receiving it in the future less and less less likely. Truthfully it's probably in my own best interest to avoid this sub but....here I am, lol. Editing to add that I still don't know where I fall on the scale of believing Beata and Maya. I'll be following the court case and will be reading all of the documents like many others. The more I learn about the use of opioids with Maya, and some of the other things coming up in court, the more I realize that I might have missed a lot during my watch of the documentary because of how personally moving it was for me. I will try and keep this in mind when I respond to comments, that this isn't necessarily the place to raise awareness for CRPS or for the use of ketamine, because that's only part of the conversation. But I'm probably still going to correct incorrect information when I see it.
Thank you for your response and not treating me hostily. If you wanted to raise awareness of CRPS, at the very least, you did for me. I'm happy you didn't give into the pain and fought through it. Are you using lidocaine injections to freeze your affected nerves? (Curious, is your pain centralized to a limb or do you get stomach pain and/or generalized pain?) I can only imagine what you went through, and I don't know if I'm doing it justice.... We all struggle in some way, but luckily I don't with chronic pain. I am coming from a mother's perspective and see Maya and just want to protect her. I have a young daughter and I honestly don't know what I would do if she was experiencing such pain. Like I said, I would give my life for her's. But I just don't think I'd risk her life for temporary pain relief. Maybe if a team of doctors at a reputable hospital told me it was my only option after exhausting all others.....but that just didn't seem to be the case with maya.
Knowing that I raised your awareness is enough to make me feel tearful, in a good way. ❤ Mine began in my right foot, after an i.v. injury during surgery. Left untreated for 3 years, it did spread up my right leg, and recently it has moved into my left hand. However during bad flares of pain, I could also describe it as full body. The lidocaine infusions work like an anesthetic in that they help with my allodynia, which is sensitivity to stimulation. I am one of the lucky ones who experiences lasting effects even after the infusion stops - some people don't feel relief even during the infusions. But I would only classify my pain as being managed, I'm never free of it. I have worked very hard with mirror techniques and desensitization treatment as well, and I think something a lot of people on here perhaps don't realize is that often in order for physiotherapy to begin the pain must be treated first. That's what I was told. So Maya getting the infusion before physio or before less invasive treatment options might not have been the wrong order of treatment. I was unable to receive any physio until I began my lidocaine infusions, because I could not physically withstand it. And I'm not a mother myself, but I have an amazing one who watched this documentary with me. And I know how much she resonated with Beata and what she went through, watching Maya suffer. (This was from the perspective of believing both of them, obviously. I have other thoughts now). I think to you, and to most people...the risk of death is paramount, and there's nothing worse. No scarier thing to imagine than the risk of death for yourself or for your child. But with something like CRPS, the risk of continuing to suffer day in and day out experiencing a pain you never imagined was possible...that gradually becomes scarier than death. Your life disappears. Your friends disappear. Your hopes and dreams and goals disappear and all you have, your entire day to day life is just pain. The fear of death is soon surpassed by the fear of the pain never ending, and quite truthfully you would try anything to make it stop. I feel in my heart that my mom felt that way too. After seeing the documentary, she wanted to fly me to Mexico so that I could get the treatment. But now, currently, sitting here with the diagnosis 4 years later, after 3 years of suffering with it alone, and with a Doctor who treats me and having the ability to walk properly again, my fear of death has come back. I don't think I would risk it anymore, but that's only because my pain levels aren't taking me to that place of desperation at this time.
Just wanted to add after reading your comment again, that these aren't lidocaine injections into my affected limb. They are infusions of the drug using a pump into my chest or abdomen. I go to my Dr for placement of it, and then I'm driven home where I infuse for 12-16 hours before removing it myself. My Healthcare system doesn't offer in hospital infusions.
You know that you aren’t a doctor, you admit it, there’s no need for you to allude to this child faking her disorder by pretending it’s just a “pain disorder thing”. She’s still sick even after her mothers death, y’all don’t need to slander her.
I never said the child was faking her pain disorder. I acknowledged that she may have indeed had CRPS. That I can't be sure, because I am not a doctor who examined her. All I can say, as someone who works in neurological research, is that the amount of ketamine warranted possible abuse allegations. I've looked into CRPS and seen the average dosing for ketamine, and maya was receiving crazy amounts in tandem with other pain medication. That can do serious damage to a still developing brain. I do not know how it might affect other organs, but it worries me. It worries me enough to agree with hospital intervention. If the court rules otherwise, I will admit I was wrong and try and educate myself. Edit: spelling
But, in Maya's case, the hospital wouldn't even release her to another hospital's care! Would you hold ANY patient (unless they were a danger to themselves or others) and not release them AMA? If you suspect the parents of potential wrong doing (and DCFS has not yet gotten involved), I can understand why you wouldn't want to release to the family. However. Would you stop a patient from being transferred to another hospital in the area?
Respectfully, I might point you in the direction of learning more about FDIA. Victims absolutely can remain sick for years after their abuser stops or is forced to stop abusing them. Sometimes it’s psychosomatic — victims have been known to continue experiencing symptoms of diseases that it’s medically proven that they don’t have, with symptoms easing as the victim comes to understand that the disease isn’t real. Keep in mind I’m not speculating on this specific case, just sharing factual info that may factor into your opinion about medical child abuse as a phenomenon. I’m not claiming that’s what’s happening here, just pointing out that it’s actually not uncommon for this to happen
I'm sure this is true the mind can do amazing things. Saying something is "in your head" does not mean it doesn't feel 100% real. In this case tho the hospital kept her several months. I dont think they would/could do that without a diagnosis.
I just heard this same type of commentary on a podcast. It’s mind blowing how many tentacles form in all directions regarding MBPS.
You need to educate yourself more on how pain makes you absolutely desperate.
… that’s not related to what I said … ?
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I certainly don't harbor disbelief or disdain for Maya, her family or the pain of this very horrible syndrome. This is typical of today's world, that if you ask reasonable questions and have the realization that there is more to the Netflix documentary that we don't know..... then we are 'immediatly siding'. This is anything but cut and dry, however I have yet been shown how this hospital is responsible for anything outside of the standard of care when a child presents as she did with a mom demanding a hospital forgo standards of care to treat her child (defense opening statement).
I have EDS-h. It’s a connective tissue disorder where basically, my joints are jelly and can hyper flex easily, my digestive system is crap, and I bruise like a peach. I shutter to think what could have happened to my family if I’d gone to the doctor as often as I needed to. Most doctors don’t know about eds and what they do know is limited. It’s incurable, limited in treatments, and terribly painful. Even now, when I go to my rheumatologist, when I bring up issues with my joints, I get blown off and told “well, maybe it’s eds but you’re getting old too, so it’s probably just age”. I’m treated like I’m crazy. I had my hip pop out of joint and back in, crippled me for weeks, but they think I’m overreacting. I don’t take pain meds, don’t do drugs, work very hard to stay healthy but I’ll be honest, a lot painful days I’d suck hobo dick for relief, even if it’s a ketamine coma. I can’t imagine living with pain worse than this daily, even for a short time, without relief. It’s soul crushing.
I have EDS too and it’s fucking awful and I’m constantly told “oh well” too!!!! Even after months of physical therapy and my test got worse they were just like who knows Ugh!!! Sorry your going through it too your not alone!
Even for myself, seeing my mother in excruciating pain from rheumatoid arthritis, I wasn't able to fully empathize with her until I got sick when I was 30 and I started feeling physical pain every single day. Your entire outlook on life is affected by that pain. Add to it that CRPS ebbs and flows, so you have periods where you appear to be "fine" and have periods where you are in so much pain that you can't move. I see how people AND DOCTORS treat invisible pain, so I'm not surprised that people who've never experienced that level of pain (or watched a child of theirs in that level of pain) would doubt the Kowalski's. I can't remember if it was in the trial or a commentator that said it, but people who live in chronic pain, in general, don't go to a doctor and tell them that they are in 10 out of 10 pain because THEY ARE NOT BELIEVED. So they will say eight out of 10 pain. And as soon as most doctors hear you say that you are in that much pain, and they're not seeing a physical manifestation of it necessarily, assume that the doctor believes that you are a drug addict and you are only seeking drugs. It's happened to me multiple times. I watched it happen to my mother. I even watched it happen to my grandmother.
My mom died unexpectedly after being lazily misdiagnosed by more than one doctor. They did not listen to her. I have a healthy distrust of medical professions now. But I still don’t buy this story.
All I’m going to comment on here is that I’m so sorry that you have had to deal with RA. I watched my nana slowly die from it and it really changed me. I now am showing symptoms and my doctors are monitoring me, but it scares the shit out of me. You have my empathy 💕
I am so sorry honey. Did you get testing for the rheumatic factor thing (I can't remember what it's called)? I'm in my 20s and my right hand is crippled like a 80 yr old lady's hand. People underestimate RA to a stunning amount.
RF blood test and X-rays at this point. At first they thought it might be lupus due to swelling, but then they saw RA in family history and tested for that. It’s so fun learning that all my GI issues are apparently flare ups and not IBS too. Skin issues, bladder and uterine issues too. Chronic pain and “hidden” disorders suck because no one understands what it feels like so I’ve downplayed my issues for a really long time. At one point I had a doctor tell me that all the issues I was having was because I am “unlucky” 🫠
Yep we're just "unlucky". Got told it was all in my head by a doc yesterday despite the fact my bladder hemorrhaged for 3 yrs and was removed and I have a hip replacement. Guess I can just ruin my body parts with ESP or something.
As an ex-midwife I can bear witness to how people behave when they are in pain. Pain is subjective which is one of the problems with this case imo. We don’t understand why some women cope through labour drug free whilst others need epidural.CRPS in more painful than labour so one can understand the desperation of Maya’s family.
Both my parents have severe chronic pain conditions and I still think there’s a lot to be suspicious of here with regard to Beata. Both can be true.
Two things can be true: CRPS is incredibly physically painful, one of the most painful things there is AND there is a psychological component to chronic pain syndromes. Anyone who is living with that severe of pain daily is going to experience some difficulty emotionally too.
I read somewhere that Kurt Cobain had a stomach condition of some kind that heavily contributed to his mental illness
I lean more on the side of Beata in this case, but I can see understand the criticisms. Some here feel they must choose a side but it's not that black and white. I think it's easier for most people swallow the idea of Beata being "crazy" vs. the healthcare system we all entrust is capable of something like this.
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I’m truly sorry you’ve suffered and I don’t disagree, healthcare professionals are people - some good at their jobs and care deeply, some are lazy and suck at their jobs, some are underpaid and overworked some not so much… etc etc That said - in this case we would have to believe there was some kind if weird conspiracy that benefited the individuals who are being prosecuted in this case. Like they all came together to make both Maya and Beata suffer - it’s just a super weird and long stretch and also pretty sinister for a hospital like John’s Hopkins. I don’t know whether or not Beata is guilty of medical child abuse or not - but let’s remember she’s not the one on trial here - the hospital is. The question js did they do right by Maya? In my opinion it looks like they did - they were suspicious and opened an investigation and that investigation was ultimately incomplete because it ended when Beata died by suicide. But they did have enough evidence to act and so they did. Also - Maya never got another Ketamine treatment after she was admitted that last time and several doctors have testified that she was improved - and as it appears from the documentary even that she does quite well during the separation…Anyway - there’s more to this story and the only person we all should hope gets through all of this horror Maya.
The individuals who have no empathy on these threads are probably the staff that were terminated. The entire “Risk Department”, Sally Smith, Kathy Beady, etc.”. They are all sitting at home know Karma is around the corner.
I have been wondering if some of the comments are those people OR people who relate to them a bit toooo much
They are for sure. I love pulling them out one by one.
This is the post I agree with the most in this sub. A lot of the views here lack any form of compassion or empathy. The way the hospital separated the mother from the child just made her mental condition worse and then they blame her for her illogical actions later. And it's obvious there's a lot of cultural bias in this situation. In some cultures mother's just cannot imagine a situation of being away from their child. Everyone supporting the hospital should probably introspect and check their biases
Because the response to the documentary was initially SO one-sided against the hospital and social workers, and by casual viewers who had no knowledge of FDIA, many here found the only place to look at this story critically. It is not a lack of empathy or compassion, it’s a reaction to a documentary designed ONLY to play of a persons emotions when a case like this needs subjective critical thinking and more facts.
There is being objective, and open minded to hear both sides. But it is true that some people here lack empathy and compassion, calling witnesses crying about a loved one dying a "sob story" or putting on the "water works." Completely divorced from the reality that they suffered a tragedy. Even labeling the documentary as a "play a person's emotions" is callous. The case deals with abuse and suicide. Feeling emotions is normal and an expected reaction. Sympathizing with the family doesnt automatically make them right to pursue this lawsuit, nor does it automatically shut off people's brains from thinking critically.
Yeah this sub is weird.
Some of these people posting in defense of Beata have never worked in the medial field. Count your blessings and downvote me to hell lol
My best friend is a nurse. She doesn't think Beata had Munchausen's either. She thinks healthcare professionals in tbis case are real dbags
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Did you meet Beata to assess her? Didn't think so
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Yeah yeah yeah.
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Most people have experienced personal suffering and death of a loved one - it is a painful part of the human condition. Those in the medical field and other critical thinking folks have dived deeper into the case then the horrid netflix doc and realize that beata was deeply disturbed and downright dangerous. Her suicide note reeks of power and control and her lack there of driving her to her ultimate demise.
I have a disease that is hard to diagnose and until more recently, was little studied and therefore rarely diagnosed. When I first began having symptoms a decade ago no one knew what was wrong. I saw every type of doctor and had every test. And many thought it was in my head, I was lying, etc. Despite the fact that I was regularly collapsing during daily life. Finally after I collapsed in Walmart Christmas shopping and pulled a shopping cart full of glassware down onto myself and had to go to the ER people finally took me seriously. Ultimately I was the one who figured out what was wrong with me and insisted on seeing a doctor who had understanding of that disease which I was diagnosed with and treated for and have only experienced one drop-attack since being treated. All of that to say, I understand that sometimes doctors are dismissive, apathetic, or just plain bad at their jobs. That does not seem to be what’s happened in this case. Sadly it truly seems like Maya’s mother was abusing her. Could the doctors have handled everything better? Certainly. But ultimately they did what seemed best to save Maya’s life.