Take care of Maya

[Cantcopewiththeheat]

Has anyone seen this on Netflix?

How could this have been allowed to happen?
I cried through so much of this

I have a cousin who has this and they have had a horrendous time. Regular pain relief just doesn't touch it because its fundamentally the brain misinterpreting signals from the nerves. So absolutely any sensation can cause the brain to interrupt it as immense pain.
I believe my cousin did at one point consider the ketamine route too. They definitely have been on ketamine at various points but not to induce a coma like they did for Maya

Thank you @mainsfed :)

It was a really heart breaking documentary. Felt so sad for all the family, there was one comment from the Mum that felt a bit ‘off’ when Maya was doing her exercises and she said “Ooooh I think Maya will be getting an extra dose of ketamine tonight!” You do have to wonder if Maya would be as well as she is now if she had continued down that route of meds

I just watched this and have concerns.

CRPS is one of those difficulty to diagnose conditions that is poorly understood and does not have a secure diagnosis and treatment pathway. There are quite a few of these unusual conditions and they are more prone to conflict in terms of agreement on diagnosis. It seems there were other doctors involved who did not reach this diagnosis.

I do wonder about the treatment pathway of massive ketamine doses - is this a researched treatment or is it experimental? It felt experimental, in that it was only available in Mexico - was it banned in the US? It can be a great drug used in the right way but I was really shocked by using an induced coma for this condition. I wonder if the Doctors involved were investigated or prosecuted as it was their 'treatment pathway' that was felt to be harmful.

It seems clear that the mother was convinced by the CRPS diagnosis and the treatment pathway suggested. She was very direct in her personality and with her experience that combined to really annoy the medical/nursing staff.

I do wonder if Sally Smith whose specialist role and long experience in Child protection cases must mean that she is very attuned to seeing even the smallest hint/symptom of child abuse - perhaps it does bias her in some situations. It makes me think of the Professor Roy Meadows situation.

But watching the video footage of Maya in hospital she seemed comfortable at times and was moving about - there was one clip where her brother and her were playing Uno and he moved her legs out of the way fairly roughly - no sign of pain showed and she shuffled herself further up the bed. This could be explained by the fluctuating nature of the disease.

I don't think it was handled well, but I would have had been thinking safeguarding.

These ‘direct’ types can get staff’s backs up but ffs it should not lead to this. So the parents were desperate and sought help. It was the doctor that offered them hope and sold them the ketamine cure. That’s on the doctor, not the parents. Who wouldn’t want to look at other options when conventional doctors were giving no solution to your child screaming in pain?

I have worked in the NHS for 30 years and am appalled at what happened to this family. But can I say that this would never happen here? Nope 😐

Just watching now, half way through. Utterly horrified. The US is so corrupt. This and their prison system is all about the $$$. Poor family.

I've just watched this and honestly I understand why the doctors were concerned.

Or maybe the OP could give some context before someone else Google’s and likely runs into spoilers?

So in America there are no patient notes/medical history held?

This was heartbreaking.
I also believe the mothers directness got the hospital workers backs up but she had already been to so many doctors and finally been given something that worked that she didn’t want to start from the beginning with it all again so I can understand her directness.
I can’t understand why the doctor who did the ketamine treatment wasn’t called to give evidence and why when sally just left what he had said out of her report that that wasn’t questioned. The mother was backed up by 2 doctors and it’s not as though she went to seek out ketamine it was the treatment plan that they gave her.
I believe that when her husband told her about his conversation with the police, she thought the only way to get maya home was if she wasn’t there any more.
I also don’t understand why there couldn’t have been any supervised contact or why maya couldn’t have been told what was going on, it must have been so frightening for her and sally and Cathy? (Can’t remember her name but was sat with maya during the calls) didn’t really come across as being warm to the child.
such a sad thing to have watched and also seeing the other people at the end, some of whom have relatives currently serving prison sentences, let’s hope the social services got it right in those cases.

Think you can cherry pick your doctor there depending on what your insurance will pay. It's very different to the NHS.

I watched this and was shocked that a child was being given such high doses of ketamine, and found the agenda of her treating doctors concerning. When one of them wrote 'she will die a slow and painful death' or words to that effect to the mother, if they don't follow their treatment plan, which does not have a solid evidence base, that is a huge red flag.

On the other hand Dr Sally Smith appeared to have her own agenda too.

Such a pity that Maya was stuck in the middle of this, with her mother.

I'm watching something now on YouTube where 2 lawyers are dissecting the case. Apparently, Dr. Sally Smith has been sued before for a very similar case where it came out that she hadn't even read the child's full medical notes.

I don't think the mother did herself any favours but I can understand why she behaved the way she did. If you've taken your child to numerous doctors and nothing has worked until this new, experimental treatment finally does, you are going to grip onto that treatment with both hands and be wary of anyone suggesting anything new.

On the other hand, you have Sally Smith who seemingly has a history of jumping to child abuse conclusions and then making the evidence fit her assumption.

Thanks for that, will take a look later.

I watched at the weekend, I do think that the mothers directness was mostly cultural and rubber staff the wrong way.

the thing I did notice was all the talk of the mother having munchhausens by proxy or stretching the truth about Mayas symptoms. The doubt that she even had the condition yet the hospital was charging them for treatment for the condition they doubted.

surely if the bill them for a specific condition that is acceptance that the condition is had?

I agree there was definete cultural differences, it's so sad that it came to this.

The bill is compelling evidence yes. The hospital may argue that their billing department made a mistake, however overall the hospital is painting themselves in a poor light. I thought the texts between professionals, referring to her as 'ketamine girl' when her mother had committed suicide, severely lack empathy as well.

My ED has CRPS and has done since she was about 14, she will be 26 tomorrow.
We have heard about the ketamine induced coma to try and help reset the brain and hopefully the pain receptors, but her worry is if it came back she wouldn't have the coping mechanisms she has built up to now with having to deal with it day in day out.
As a parent, I have felt people think we were making things up, that it was in her head, and some of the treatments she had in the early days was just awful. Thankfully times and practices have changed so that wouldn't happen now, but she had physios holding her heels, where she had the pain first, to try and 'desensitise' them.
I don't think I could watch this programme tbh, to close. I don't know where Maya had her pain, but if it wasn't in the area that her brother touched when moving her legs, then that would explain why she didn't react to it.

My youngest had/has crps. It is horrendous. Adults get to have strong pain meds. My DD had ibuprofen. She has stress related flair ups still.

Thank you for focusing on this outrage. For up-to-date information on the diagnosis and management of CRPS, please visit rsds.org

Why didn't the doctor who diagnose her be more active in backing up the treatment. When it wasn't upheld then they should have gone back and insisted his expertise was included.

This was heartbreaking. Maya must’ve been terrified, not knowing what was going on.
I can absolutely see how Beata got to the point she did, she could see no other way out for her family.

I struggle to see how Beata could have ended her life after such a short period of time, leaving her family to deal with it alone.

I thought the documentary might end with the Dr. Sally Smith in prison tbh. So much harm was caused. Also, I thought it really interesting that she was a 'child abuse paediatrician' - when the only tool you have is a hammer, everything looks like a nail. She seemed to be focused on child abuse to the exclusion of anything else.

My child watched this and told me not to.

My daughter had surgery for a gigantic ovarian cyst (took years to diagnose she was refused tests and told to go to slimming world), it didn't reset her pain gayeways, though we have a different pain condition.

Our circumstances were different from the film.

I am not surprised the mother died, I met others who went through similar all were broken from it and all wanted to die to escape the living nightmare, all never were apologised to.

What made me survive was, prayer and righteous anger at the thought they would gaslight my children, I wanted to die from grief, my heart actually ached and I cried most of the time.

I despise professionals, I don't care if they rot in hell, it's good enough for them, they don't apologise they tell you like dead eye snakes to "move on" like nasty psychopaths, I have met true evil.

As we see from this and the trans issue many professional induce illness in families based on fabrications, it's quite a big problem nobody wants to accept.

I thought it was quite one sided actually. Watching her in that ketamine coma was hideous & why did they film it? I’d never have done that to my DC. I do think the Mum had some issues & I’d like to have seen the full story.

Also interesting that she’s made a good recovery now.