BeginnerSleuther
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These are off-label treatments which is fine, but the point is it isn't FDA-approved. And federal hospitals don't treat children.
‘Take Care of Maya’ - Kowalski v. Johns Hopkins Trial
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These are off-label treatments which is fine, but the point is it isn't FDA-approved. And federal hospitals don't treat children.
I recently listened to several seasons of a podcast, titled “Nobody Should Believe Me”. The host, Andrea Dunlop, digs deep into the topic of Munschausen by Proxy. Dunlop’s sister was investigated for MBP abuse, and this was the foundation of her interest in the subject. She has become quite an expert.
In the 3rd season of Nobody Should Believe Me, Dunlop digs deep into the “Take Care of Maya” Case. It is extremely well-researched and well presented, in my opinion. I encourage anyone following this case and court proceedings as well as anyone who watched the Netflix doc to listen to a different point of view.
By now I have seen different documentary productions on well known cases which I found quite slanted in favor of guilt or innocence of accused parties. It’s a good idea to take them with a grain of salt and seek some balance.
I hope to have the chance to discuss the podcast if anyone takes the time to listen. I’d love to see if anyone following the Maya case changes their mind re the culpability of John’s Hopkins Hospital.
In the 3rd season of Nobody Should Believe Me, Dunlop digs deep into the “Take Care of Maya” Case. It is extremely well-researched and well presented, in my opinion. I encourage anyone following this case and court proceedings as well as anyone who watched the Netflix doc to listen to a different point of view.
By now I have seen different documentary productions on well known cases which I found quite slanted in favor of guilt or innocence of accused parties. It’s a good idea to take them with a grain of salt and seek some balance.
I hope to have the chance to discuss the podcast if anyone takes the time to listen. I’d love to see if anyone following the Maya case changes their mind re the culpability of John’s Hopkins Hospital.
Trebor5591
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what is your opinion please?
SeesSeas
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All Children’s says Maya trial and $208 million verdict flawed
Johns Hopkins All Children’s Hospital attorneys argue for retrial in ‘Take Care of Maya’ case.
TAMPA — Can a hospital be held liable for the suicide of a mother who had not stepped foot on its campus for more than three months?
More than one year after a civil trial found that Johns Hopkins All Children’s Hospital falsely imprisoned and battered a 10-year-old Venice girl and contributed to her mother’s suicide, hospital attorneys on Wednesday argued in a Tampa appellate court for a retrial or for the court to, at least, strike down some of the $208 million in damages.
Beata Kowalski took her life in 2017, three months after a judge sheltered her daughter, Maya Kowalski,... [...]
Charlot123
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My condolences to the Kowalskis; they lost the wife and the mother. God knows when they’ll recover from the loss. I just hope that sharing their story would somehow ease the pain.
But I do have some questions. Here is how it starts. The parents who already had experience observing how ketamine affected their child, bring the kid to the hospital for abdominal pain. When an unusually large dose of ketamine is asked for routine US, the nurse is concerned and alerts SCW (Hansen). Who makes a report to local CPS but they find no validity in it. Case closed, the hospital is under no obligation whatsoever to prescribe ketamine. But a ICU pediatrician, Dr. Beatriz Teppa Sanchez, is still concerned about the request, the doses and the frequency of using medical system. She calls an external specialist, Dr. Sally Smith, an MD specializing in child abuse, and here is how the wheels are set in motion.
I understand why Dr. Beatriz Teppa Sanchez was concerned about over treatment. However, ketamine is not something sold over-the-counter. It is a strictly controlled drug. Seems that Maya was getting it in IV form for her CRPS, so it could not be diverted. I don’t know what form mom asked for during US, I assume it was oral (unusually high per literature), but anyhow, the medication would have been given to Maya. All questions, it seems, should have been directed to the providers prescribing it for Maya’s diagnosis, not to the parents.
There is an anesthesiologist, Dr. Anthony Kirkpatrick. He has a clinic in Tampa specializing in CRPS. He diagnoses Maya with it. Remembering how IV ketamine clinics sprouted at that time, the medication itself is unsurprising. The age of the patient, honestly, is. The child is getting IV infusions, 10,000 per IV session of four days; every 3-4 weeks. Too costly; the family finds another provider, Dr. Hanna, whose rates are cheaper, but it is still an expensive drug. Mom works two job to meet the cost of treatment. They sell a rental house. Already a lot of stress and burden, to think of. But that’s the beginning. The family travels to Hospital San José Tecnologico in Monterrey, Mexico, for a five-day procedure that required Maya to be sedated and intubated to receive high-dose infusions of ketamine. (To me it would feel like having five surgeries back-to-back. Does anyone ask the same question I do, what happens when strong analgesic treatment is suddenly stopped, could there be a discontinuation effect and how would it present and feel? No one can probably tell; the clinic in Mexico seems to be totally out of the loop here; but they should be asked, IMHO. Can Maya’s pains and lack of sleep be explained by discontinuation? How would a brain respond to discontinuing five days of anesthesia?)
In hindsight, it seems the best option would have been for JH to refer Maya back to her very first provider, to deal with the diagnosis or treatment. If JH All Saints had questions about the doses or the diagnosis, there were ways to go for a big children’s hospital serving the community. But the parents were not doctors; they seem to have been on the receiving end here. They are not supposed to know everything about ketamine or glutamate, for that matter.
(I also see some lack of cultural awareness in this case. I can very well imagine how poor Beata, Mrs. Kowalski, looked and sounded. I can even understand why they went to doctors so often; to give a call and receive an answer via a nurse may not be enough for us, either. There are many things that feel misunderstood, in hindsight.)
And now the whole family has to live with a horrible web of emotions.
And on the other hand, the pediatric population of Pinellas county is on the receiving end, too. It is hard to get specialists consultations for children.
But I do have some questions. Here is how it starts. The parents who already had experience observing how ketamine affected their child, bring the kid to the hospital for abdominal pain. When an unusually large dose of ketamine is asked for routine US, the nurse is concerned and alerts SCW (Hansen). Who makes a report to local CPS but they find no validity in it. Case closed, the hospital is under no obligation whatsoever to prescribe ketamine. But a ICU pediatrician, Dr. Beatriz Teppa Sanchez, is still concerned about the request, the doses and the frequency of using medical system. She calls an external specialist, Dr. Sally Smith, an MD specializing in child abuse, and here is how the wheels are set in motion.
I understand why Dr. Beatriz Teppa Sanchez was concerned about over treatment. However, ketamine is not something sold over-the-counter. It is a strictly controlled drug. Seems that Maya was getting it in IV form for her CRPS, so it could not be diverted. I don’t know what form mom asked for during US, I assume it was oral (unusually high per literature), but anyhow, the medication would have been given to Maya. All questions, it seems, should have been directed to the providers prescribing it for Maya’s diagnosis, not to the parents.
There is an anesthesiologist, Dr. Anthony Kirkpatrick. He has a clinic in Tampa specializing in CRPS. He diagnoses Maya with it. Remembering how IV ketamine clinics sprouted at that time, the medication itself is unsurprising. The age of the patient, honestly, is. The child is getting IV infusions, 10,000 per IV session of four days; every 3-4 weeks. Too costly; the family finds another provider, Dr. Hanna, whose rates are cheaper, but it is still an expensive drug. Mom works two job to meet the cost of treatment. They sell a rental house. Already a lot of stress and burden, to think of. But that’s the beginning. The family travels to Hospital San José Tecnologico in Monterrey, Mexico, for a five-day procedure that required Maya to be sedated and intubated to receive high-dose infusions of ketamine. (To me it would feel like having five surgeries back-to-back. Does anyone ask the same question I do, what happens when strong analgesic treatment is suddenly stopped, could there be a discontinuation effect and how would it present and feel? No one can probably tell; the clinic in Mexico seems to be totally out of the loop here; but they should be asked, IMHO. Can Maya’s pains and lack of sleep be explained by discontinuation? How would a brain respond to discontinuing five days of anesthesia?)
In hindsight, it seems the best option would have been for JH to refer Maya back to her very first provider, to deal with the diagnosis or treatment. If JH All Saints had questions about the doses or the diagnosis, there were ways to go for a big children’s hospital serving the community. But the parents were not doctors; they seem to have been on the receiving end here. They are not supposed to know everything about ketamine or glutamate, for that matter.
(I also see some lack of cultural awareness in this case. I can very well imagine how poor Beata, Mrs. Kowalski, looked and sounded. I can even understand why they went to doctors so often; to give a call and receive an answer via a nurse may not be enough for us, either. There are many things that feel misunderstood, in hindsight.)
And now the whole family has to live with a horrible web of emotions.
And on the other hand, the pediatric population of Pinellas county is on the receiving end, too. It is hard to get specialists consultations for children.
Charlot123
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I have to listen to it. Where can I find it?
Several questions that emerge, one,
- can the hospital be held so liable for someone who is not, legally, their client?
- if the hospital is unsure and asks an outside provider, “a consultant”, to give their opinion, is it then the consultant’s liability?
- if there is a concern about high doses of a medication that is prescribed to a child, surely there are ways to raise concerns about the prescribing practices without blaming the parents first? In short, before saying, Munchausen by proxy, was the question “who prescribes such doses to a child?” asked.
- what were the laws in Florida regarding potential child abuse cases when Maya’s case was unfolding? Is it possible that children’s hospital where everyone is a mandatory reporter, simply had to go with the whole investigation once they got Dr. Smith’s conclusion?
- last, how do we factor in the cost of IV ketamine treatment in this situation?
Soulmagent
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Quim The Extraordinaire
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I also found the “Nobody Should Believe Me” podcast compelling. I have not had time to watch the tv series yet, so I’m not steadfast on a certain side. I think MbP/factitious disorder is often missed, and the intersection between a child’s medical care and parental rights / beliefs is fascinating and do not know if we can find one solution to fit so many unique cases.
The url for the podcast website is below with options for listening, including via web browser:
Nobody Should Believe Me Podcast | Munchausen by Proxy and A Sister’s Search for Hope
I have listened to all episodes of the podcast, and also listened to Andrea Dunlop’s recent audiobook. I believe Maya is a victim of MBP, based on what has been presented by Andrea. If she is correct, then it is scary for anyone to report suspected medical child abuse for fear of this sort of lawsuit and huge awards.
My opinion.
Thanks for posting the link to the podcast. I think Andrea Dunlop has taken on a great work in educating about and exposing MBP. When you search the Maya case, the media overwhelmingly sides with the Ks. I would love to see a reputable media outlet tell the MBP side of this story to counter the Netflix one-sided presentation of this case.
IMHO
IDK
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My main reservation with Andrea Dunlop’s podcast is that I did not find her to be objective. She has a sister who was accused of MBP and IMO that has affected her ability to be impartial.
I listened to her podcast quite a while ago. One thing I appreciated was that she was an advocate for Maya ( whether this was MBP or not) and did not engage in any of the victim blaming that I have seen in many other places.
All IMO.
I listened to her podcast quite a while ago. One thing I appreciated was that she was an advocate for Maya ( whether this was MBP or not) and did not engage in any of the victim blaming that I have seen in many other places.
All IMO.
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Charlot123
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I would not be so sure, because I don’t know any of these people. MOO: if Maya’s symptoms started when she was a baby, and mom didn’t sleep, it produced consequences. JMO: for pure MbP, when the secondary gain is often attention to the parent, working two jobs and selling a rental to pay for the child’s expensive treatment is uncommon. After all, the desired effect (attention and sympathy) could have been achieved in a different way, by “fabricating” a different, “less expensive”, symptom. What else could have been misdiagnosed in a child? This is something I can’t fathom because what children report as “pain” might be a multitude of uncomfortable sensations. I am wondering about the initial diagnosis and how difficult it is for a”narrow” specialists to think out of the box. Enters another narrow specialist, who for years has seen victims of parental abuse; we know the rest.
As to ketamine, it appears to help so many conditions and symptoms that its effect per se was unsurprising. And then, what parents see is a miraculous but too expensive drug that works; when the person is not on it, the symptoms probably come back with the vengeance. Of course they ask for the drug.
Two stories from acquaintances: one about a woman whose baby was crying non-stop and in about four months, he was diagnosed with hiatal hernia. Their doctor prefers minimalistic approach to babies; a month later, the mother was truly at her wits’ end. Another situation was unusual: failure to thrive (often associated with MbP) although mom was diligently breast-feeding the baby. Finally, someone thinking outside the box thought of collecting the maternal milk (in doctors’ presence) and testing it. It turned out very low-caloric. The poor woman was producing a lot of watery milk. When it was found out, both the baby and the mom needed help, as I can imagine.
Again, no one can form an opinion by just reading the story. All CPS situations = “darn if you do, darn if you don’t”.
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I’m so glad to finally connect with someone who has listened to the podcast!
I agree objectivity is difficult, given Andrea’s family experience with her sister’s suspected MBP. However, I think she quite regularly concedes the possibility of her own bias, and makes every effort to counter it. She gives all parties mentioned the option of being interviewed. She uses quite good source materials, in my opinion.
As I said, I have listened to all episodes (I’m a podcast junkie) from many seasons and a book in the subject of MBP, and the work AD has done with the cop, Mike, I feel they have built up a foundation of credibility, at least for me they have.
IMHO
Th
One difficulty I see is that MK’s mother BK is dead, so her influence on her treatment has ended. Coincidentally, MK’s health rebounded, which is great, considering her mother had at one point discussed hospice care for MK.
This was not a condition that started in infancy.
A big red flag was BK’s willingness to take MK to Mx for an extremely dangerous experimental treatment with a 50% chance of death.
When the medical professionals suspected medical child abuse, they were required to report to proper authorities. Just report it, not verify it. John’s Hopkins was not the investigating body. There was a DCF investigation, and a judge issued the no contact order.
It’s also interesting to note one other hospital had reported suspected MBP and one other doctor had charted concerns of MBP. These are medical professionals with no connection to one another.
As for the ketamine treatment BK was insisting on, it is extremely dangerous and life threatening. No one, no patient, no parent has the right to demand or compel a particular form of medical treatment from a doctor or hospital medical team.
There is more to this story than what was covered in the Netflix documentary.
Most folks who end up at WS have an interest in crime and justice. We look at all sides of a case to form opinions, not just one side of the story. In this case, I found it helpful to learn a lot about MBP from what I found to be an interesting source, the podcast Nobody Should Believe Me.
If someone can point me to another source of education on MBP I’ll gladly check it out too.
All the above is my own opinion.
There is a lot to unpack in your comment, and I’d need to go back and refresh my memory on that particular case. I’ll just make a few comments.
One difficulty I see is that MK’s mother BK is dead, so her influence on her treatment has ended. Coincidentally, MK’s health rebounded, which is great, considering her mother had at one point discussed hospice care for MK.
This was not a condition that started in infancy.
A big red flag was BK’s willingness to take MK to Mx for an extremely dangerous experimental treatment with a 50% chance of death.
When the medical professionals suspected medical child abuse, they were required to report to proper authorities. Just report it, not verify it. John’s Hopkins was not the investigating body. There was a DCF investigation, and a judge issued the no contact order.
It’s also interesting to note one other hospital had reported suspected MBP and one other doctor had charted concerns of MBP. These are medical professionals with no connection to one another.
As for the ketamine treatment BK was insisting on, it is extremely dangerous and life threatening. No one, no patient, no parent has the right to demand or compel a particular form of medical treatment from a doctor or hospital medical team.
There is more to this story than what was covered in the Netflix documentary.
Most folks who end up at WS have an interest in crime and justice. We look at all sides of a case to form opinions, not just one side of the story. In this case, I found it helpful to learn a lot about MBP from what I found to be an interesting source, the podcast Nobody Should Believe Me.
If someone can point me to another source of education on MBP I’ll gladly check it out too.
All the above is my own opinion.
Charlot123
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Also MOO: Coming from the culture that’s “different, but similar” to that of Beata, I wonder if initial expectations were slightly different. Remembering own childhood and very early childhood of my older son: “full physical” was never an internist + labs. No, it was a number of specialists, whether one had problems or not. Ophthalmologist, endocrinologist, ENT, neurologist, orthopedist, GI…it was not for problems, rather, it was for “prevention”. It would be interesting to ask out Polish contributors, could it be so that what was seen as “doctor shopping” was linked to different cultural expectation? Not “better or worse”, just different? I have a vague question whether that and (also) the fact that you’d spend more time in a doctor’s office in “the old country” than here, contributed to how Beata came across? I can see that she was probably oversharing, but this might also be culture-specific. Of course, I might be wrong.
Then comes the question of a very rare diagnosis. I am not even remotely knowledgeable of different pain conditions, so no comment on CRPS. But how can we discriminate between a client with CRPS which is so rare, a too-trusting client, a person who really can’t pull the symptoms together and factitious disorder? (Of another condition, not that uncommon in the NE + one more state but seldom met elsewhere, I heard more. There are clinics treating it in areas where the condition is seldom met. Add to it that the diagnosis is usually based on test results, but they can be negative. The treatment is not covered by insurance, either. How does one view people who subscribe to this diagnosis? Some might have it, some are gullible, most are probably not ready to accept other diagnoses, but very few have fictitious disorder.)
With ketamine treatment, the hospital was right to refuse it. In fact, with all very rare diseases and already uber-complicated treatment, people should be sent straight back to the original specialists. JMO. There are two or three places in the country dealing with it, and they should bear the responsibility. Kids have to wait months to see a neurologist or an endocrinologist, and there is one JH in Pinellas county.
JMO: I bet there was more to the story than was covered by Netflix! I have to wait till the weekend to listen to the podcast. So here is my very personal guess before I listen to the podcast:
Not MbP. A gullible parent.
It is interesting how it will change after the podcast.
BeginnerSleuther
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Every doctor in the country is a mandated reporter of suspected child abuse. The state makes no difference.
When a high dose of a medication is specifically asked for by a parent, that raises a red flag. Then you add to that that multiple doctors have given doses of the medication, including doctors outside the country, it raises a bigger red flag about potential doctor shopping. We can all look at it in retrospect and make judgments, but IMO, the hospital fully believed this girl was being abused and the reason they believed it is believable and understandable.
MOO.
Thanks for your reply.
As it happens, I married into a very huge Polish family, so I have over 35 years experience with the culture. Not to make generalizations about Polish folks, there can be a communication style I have experienced which may come off as brusque or blunt, perhaps a little pushy. That said, it would be difficult to picture this cultural difference to motivate medical professionals to report this mother as one committing medical child abuse.
I look forward to discussing further when you’ve had a chance to listen to the podcast.
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Soulmagent
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I really should opt out this whole thread for personal issues. Just because as a parent of kids that needed or will forever medical treatment , sometimes I come across really huge idiots , that try to do the whole thing they went to school for (yay for them ) Seriously my sons new infusion place has a 2 hour min for 500 cc. For the rest of our life, every 8 weeks (or 6 if antibodies dont want to play right)
I dont understand the Polish thing in your post or this thread, I also dont understand what culture you mean. I do have a bit of experience with seriously sick kids.
I do understand how some people are more brash.