Take Care of Maya

[Anonymous]

I’m the above poster. I made the hypothetical up but have read about such cases. Here’s one right on point and it’s mimicking Maya’s case:

https://www.fox9.com/news/family-battles-hospital-in-court-over-sons-cancer-treatment.amp

[Anonymous]

Anonymous wrote:

Anonymous wrote:The doctor is the one who suggested and gave ketamine to Maya, not Beata. They saw her dramatically improve with freedom of pain. So Beata wanted to continue with the treatment that seemed to have helped her daughter. I dont see how that’s abuse from Beata.

Bc you can find a doctor anywhere to say anything. Let’s say you go to a doctor who tells you your chemo needing child can instead eat a raw food diet and get sunlight daily. Can you shrug and say it’s on the doctor bc I trusted what he said?

Um, yes, yes you can!

[Anonymous]

Anonymous wrote:

Anonymous wrote:The doctor is the one who suggested and gave ketamine to Maya, not Beata. They saw her dramatically improve with freedom of pain. So Beata wanted to continue with the treatment that seemed to have helped her daughter. I dont see how that’s abuse from Beata.

Bc you can find a doctor anywhere to say anything. Let’s say you go to a doctor who tells you your chemo needing child can instead eat a raw food diet and get sunlight daily. Can you shrug and say it’s on the doctor bc I trusted what he said?

It's not that clear, as there aren't that many doctors who specialize in CRPS. In addition, the approach to CRPS has shifted since the events in the documentary to an approach that focuses on therapy and physical therapy and not medications. The documentary does not offer a clear timeline, but it does reflect that the family tried other things, including lower doses of ketamine, before going to Mexico for treatment.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The doctor is the one who suggested and gave ketamine to Maya, not Beata. They saw her dramatically improve with freedom of pain. So Beata wanted to continue with the treatment that seemed to have helped her daughter. I dont see how that’s abuse from Beata.

Bc you can find a doctor anywhere to say anything. Let’s say you go to a doctor who tells you your chemo needing child can instead eat a raw food diet and get sunlight daily. Can you shrug and say it’s on the doctor bc I trusted what he said?

Um, yes, yes you can!

Wrong

[Anonymous]

Sure you can find a doctor who will say/diagnose anything, but then the hospital says she doesn't have CRPS, and then bills her insurance as if she has it and they are treating it. What about that? Not to mention multiple doctors have diagnosed her with CRPS. Plus the treatment (meds and PT) specific to CRPS have very much helped her symptoms!

[Anonymous]

I might trust a doctor who used an extreme therapy if it helped my child and freed her from pain,

[Anonymous]

Anonymous wrote:I might trust a doctor who used an extreme therapy if it helped my child and freed her from pain,

Exactly. That's what makes this case so difficult. We aren't talking about a parent rejecting conventional treatment for a disease. It sounds like they tried other things that did not help.

Also, in response to the link about the family that didn't want chemo for their son, the state did not take the son away from the parents because of this disagreement about treatment.

I've posted several times in this thread offering my opinion as a parent of a child with CRPS. Unless you have been through an experience like Maya's, you can't understand the desperation a parent feels trying to help a child experiencing extreme pain. The level of stress and desperation is ratcheted up when you have to deal with uninformed healthcare providers who seem to understand nothing about your child's condition. Body parts that are affected by CRPS are extremely painful even when touched lightly. For some, even a shower or the touch of a blanket brings intense pain, so imagine how Beata felt seeing nurses put a blood pressure cuff on Maya's arm without any regard for her pain.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I might trust a doctor who used an extreme therapy if it helped my child and freed her from pain,

Exactly. That's what makes this case so difficult. We aren't talking about a parent rejecting conventional treatment for a disease. It sounds like they tried other things that did not help.

Also, in response to the link about the family that didn't want chemo for their son, the state did not take the son away from the parents because of this disagreement about treatment.

I've posted several times in this thread offering my opinion as a parent of a child with CRPS. Unless you have been through an experience like Maya's, you can't understand the desperation a parent feels trying to help a child experiencing extreme pain. The level of stress and desperation is ratcheted up when you have to deal with uninformed healthcare providers who seem to understand nothing about your child's condition. Body parts that are affected by CRPS are extremely painful even when touched lightly. For some, even a shower or the touch of a blanket brings intense pain, so imagine how Beata felt seeing nurses put a blood pressure cuff on Maya's arm without any regard for her pain.

There is a recording in the documentary of a doctor (immunologist I think?) saying “there is nothing I can do for you.” When you hear this from multiple doctors, you are SO relived to finally meet one who acknowledges what you’re going through, believes you, has heard of it and provides a diagnosis. Even if their treatment seems radical, you are way more inclined to trust it.

It is an incredibly lonely road when doctors don’t give you answers. This is also why it is not fair to mock people for using “Dr. Google” and trying to self help via internet. Most would GREATLY prefer not to be in that position.

[Anonymous]

I have two emotional connections to this story. One, I was desperate enough to save my life from treatment resistant depression that I sought out IV ketamine about 6 years ago before it was commonplace. It was miraculously efficacious and hen nothing else was, and I met dozens of people in waiting rooms who had similar experiences, as well as with CRPS and fibromyalgia…not surprisingly, also diagnoses where women’s self-reporting of their own pain is often dismissed as exaggerated or hysterical. Just as ketamine seems to successfully “reset” many of a patient’s default neural pathways in a way that changes thought patterns in depression, so it can also “reset” the brain’s pain perception system that has gone haywire.

It is not surprising to me at all that ketamine is a successful treatment for CRPS. It *was* surprising that she was in such high dosages, as it is certainly also addictive at high doses, so some of the pain Maya might have been suffering in the hospital was likely withdrawal.

Even so, the removal of her child from her care and presence is so over the top cruel that I can’t fathom the level of pain the child and her mother were in. Beata was pushy and confident in her knowledge and expertise. It seemed more like the doctors and nurses were offended that she questioned their God-given authority.

The second way that it hit me emotionally was the memory of being separated from my son when he was in the NICU and I was recovering from pre-eclampsia and an emergency C section. Hospital staff wouldn’t let me see the baby until I brought my blood pressure down, which I felt I couldn’t do until could touch my baby. I felt so enraged and helpless and loooked down upon. I can’t imagine how much more magnified Beata’s stress was. That poor woman.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The doctor is the one who suggested and gave ketamine to Maya, not Beata. They saw her dramatically improve with freedom of pain. So Beata wanted to continue with the treatment that seemed to have helped her daughter. I dont see how that’s abuse from Beata.

Bc you can find a doctor anywhere to say anything. Let’s say you go to a doctor who tells you your chemo needing child can instead eat a raw food diet and get sunlight daily. Can you shrug and say it’s on the doctor bc I trusted what he said?

It's not that clear, as there aren't that many doctors who specialize in CRPS. In addition, the approach to CRPS has shifted since the events in the documentary to an approach that focuses on therapy and physical therapy and not medications. The documentary does not offer a clear timeline, but it does reflect that the family tried other things, including lower doses of ketamine, before going to Mexico for treatment.

The timeline seemed pretty clear to me?? Maya started presenting with pain in July 2015 and they flew to Mexico for the ketamine coma in November 2015. IDK, that seems like a pretty short amount of time to decide to fly your kid to Mexico for a treatment that isn't legal in the US...

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:So did they eventually give her high dose ketamine? Or did she improve on her own like they said she would?

Seems crazy the mom gave up after less than 3 months. That’s not that long.

I don't think that Maya "improved on her own." It took her several years of treatment before she started walking again. Treatment for CRPS usually involves a multi-disciplinary approach that includes counseling, intensive physical therapy, and sometimes pain management. It also involves educating the family.

It's not accurate that the mother gave up after three months. She had been trying to help her daughter for years when the cruel treatment at the hands of Dr. Smith and the hospital put her over the edge. It's hard to imagine what it feels like to have a chronically ill child. My guess is that Beata thought that after the ketamine coma, they were on the right path, so having what seems like a major setback hit her hard.

The difficult thing about CRPS is that not all doctors agree on what to do. An older generation of doctors, which it seems like Dr. Kirkpatrick was a part of, believe that you need to address a patient's pain (calm it down) before you start PT to regain function. The newer approach is to immediately start intensive PT, regardless of the pain level. If, as a parent, you are hearing two different voices, one that appears to be addressing your child's pain and another that is going to cause pain, which one would you choose? It's a huge leap of faith to accept that your child, who is in terrible pain, will get better if you force them to endure even more pain.

It can't be stated enough how unfamiliar with CRPS many healthcare providers are. One of the things mentioned in the documentary (or maybe it was an article) was that Beata was concerned about the nurses causing pain by taking Maya's blood pressure. If your child has a condition where even a light touch causes pain, dealing with providers who don't understand or don't seem willing to understand undermines your confidence in their professional judgment.

Still, it seems horrible that she took her own life because she “couldn’t take it anymore” but her daughter had been through it all herself and was still coping and still needed her mother. I could never have abandoned my child. Never.

Well, enjoy your smug self-satisfaction. You have pearly never had major depression so severe that you had suicidal symptoms. You might choose to be grateful for your health rather than self-congratulatory.

If you can see how much your death would hurt your child, then you clearly have NEVER been as sick as Beata was, and you should feel lucky for that. My brother died by suicide. He was the most loving, protective, dedicated father I knew. When he was well, he would willingly have stood in front of an oncoming train to protect his kids. But his brain was so sick and so haywire and k the day of his death that he truly believed death was the only way and best way to help them. I have a feeling tyat Beata’s brain told her similar lies.

I got the sense that Beata was enmeshed and gathered music of her self-esteem from her ability to alleviate her daughter’s suffering, but that doesn’t mean she caused it.

[Anonymous]

In my experience, doctors react poorly to patients who understand their own conditions and are direct about effective treatments. Beata was a nurse and knew what worked for her daughter. The hospital interpreted her behavior incorrectly and Beata killed herself to free her daughter. Hope Johns Hopkins has to pay!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The doctor is the one who suggested and gave ketamine to Maya, not Beata. They saw her dramatically improve with freedom of pain. So Beata wanted to continue with the treatment that seemed to have helped her daughter. I dont see how that’s abuse from Beata.

Bc you can find a doctor anywhere to say anything. Let’s say you go to a doctor who tells you your chemo needing child can instead eat a raw food diet and get sunlight daily. Can you shrug and say it’s on the doctor bc I trusted what he said?

It's not that clear, as there aren't that many doctors who specialize in CRPS. In addition, the approach to CRPS has shifted since the events in the documentary to an approach that focuses on therapy and physical therapy and not medications. The documentary does not offer a clear timeline, but it does reflect that the family tried other things, including lower doses of ketamine, before going to Mexico for treatment.

The timeline seemed pretty clear to me?? Maya started presenting with pain in July 2015 and they flew to Mexico for the ketamine coma in November 2015. IDK, that seems like a pretty short amount of time to decide to fly your kid to Mexico for a treatment that isn't legal in the US...

Yeah. Per court docs symptoms start in July 2015, Ketamine coma 2.5 months later, ketamine protocol from then until October 16th when she was admitted, released to her father in January 2017, completed PT and was walking around and resuming all normal activities by August 2017.

[Anonymous]

This article hasn’t been posted here yet, but it adds some context by mentioning a few key things omitted in the documentary from the oft-redacted immunity motion.

Several doctors “personally observed that Mrs. Kowalski was aggressively hostile towards providers who disagreed with her, screaming and demanding the Maya be placed into a medically induced coma and have a pump implanted in her spine.”
Beata once stated that “Maya was in so much pain, she ‘wants to go to heaven.’”
Doctors observed that Maya “acted inconsistent with her and her mother’s claims of severe pain and disability … including standing up in her bed and sitting ‘Indian style.’”
The girl told a nurse she was “tired of these lies.”
“Maya was severely underweight and hadn’t eaten for five days before arriving … because she wasn’t ‘allowed.’”
The document notes that other facilities, including Tampa General Hospital, also suspected Beata of medical abuse. It adds that if the Florida Department of Children and Families (DCF), two circuit judges and a sheriff’s deputy “found probable cause to suspect abuse, the conclusion is inescapable” that All Children’s also had reasonable cause to suspect and report a potential crime.
“Most disturbingly is that Jack Kowalksi admitted to the police investigator that he witnessed the same concerning behavior from his wife that the medical professionals witnessed,” wrote Shapiro. “When he was with Maya, Maya had no complaints of pain; when Maya’s mother got home, Maya would suddenly be in pain.”
According to another court document, Jack agreed that there is a psychological component to his daughter’s condition.
If any of that’s true it paints a bit of a different picture imo. Either way it’ll be interesting to hear the arguments from both parties during the trial.

https://stpetecatalyst.com/who-is-to-blame-in-take-care-of-maya/amp/

[Anonymous]

Anonymous wrote:I have two emotional connections to this story. One, I was desperate enough to save my life from treatment resistant depression that I sought out IV ketamine about 6 years ago before it was commonplace. It was miraculously efficacious and hen nothing else was, and I met dozens of people in waiting rooms who had similar experiences, as well as with CRPS and fibromyalgia…not surprisingly, also diagnoses where women’s self-reporting of their own pain is often dismissed as exaggerated or hysterical. Just as ketamine seems to successfully “reset” many of a patient’s default neural pathways in a way that changes thought patterns in depression, so it can also “reset” the brain’s pain perception system that has gone haywire.

It is not surprising to me at all that ketamine is a successful treatment for CRPS. It *was* surprising that she was in such high dosages, as it is certainly also addictive at high doses, so some of the pain Maya might have been suffering in the hospital was likely withdrawal.

Even so, the removal of her child from her care and presence is so over the top cruel that I can’t fathom the level of pain the child and her mother were in. Beata was pushy and confident in her knowledge and expertise. It seemed more like the doctors and nurses were offended that she questioned their God-given authority.

The second way that it hit me emotionally was the memory of being separated from my son when he was in the NICU and I was recovering from pre-eclampsia and an emergency C section. Hospital staff wouldn’t let me see the baby until I brought my blood pressure down, which I felt I couldn’t do until could touch my baby. I felt so enraged and helpless and loooked down upon. I can’t imagine how much more magnified Beata’s stress was. That poor woman.

I am so so sorry this happened to you. This is cruel and I would even say abusive to do that to a sick new mother. I had severe postpartum preeclampsia so I know how traumatic it already was to be in that situation. I can’t believe they did that to you.