Have you ever come across munchausens by proxy?

[Namechangeone]

As per my username I’ve name changed. It’s quite an identifying situation so I’m not going to go into too much detail but don’t want to drip feed either

Edited for clarity: Has anyone experienced munchausen by proxy themselves or known someone that has? I could be wrong about this but it's what myself and others suspect.

Im middle child of 5. Us older 3 lived with grandparents, youngest 2 with parents.

I unfortunately have had quite bad luck when it comes to health. Various ICU stays, operations, long term conditions. No empathy from my parents and now grandparents unfortunately have died.

My younger brother who grew up with my parents has perfect health, had many scans after our mum claiming my brother can't barely walk/has back pain/stomach pain all sorts. Had every test going from teens until now (he is late 20s). Even went as far as paying for private tests because they didn't believe nhs consultants.
They've bought him a wheelchair/crutches for when things are bad - this typically happens when I've just had a hospital stay or there's an event coming up.
In privacy he walks around at home normal. He lives next door in a house they built for him but stays at parents house.

Recently they took him to A&E saying he needed emergency surgery as he's suddenly paralysed - scans were clear. This was day 1 after myself being diagnosed with lymphoma.

He has had every scan going that you can think of and multiple opinions. Also my brother and parents have been offered psychiatric support many times (and declined)

At home he doesn't need to even take paracetamol but if there is an event, he's in agony and needs pain relief and looking after. Apparently can't take tablets so it's calpol 🤦‍♀️
They have a prayer WhatsApp group for him & regular social media posts.

Im not envious of the lack of empathy I have - I'm quite happy in my own bubble & I wouldn't want to live this fake life. I had a good childhood with my grandparents, although miss my gran especially a lot with everything going on in my personal life.
I do have therapy/counselling etc & continue to throughout the years.

Everything had gone back to "normal" with them all but my brother is getting married in a couple of weeks and the wheelchair etc is back out. This happened after the A&E visit one day after my lymphoma diagnosis.
I can't get my head around it all.

I just basically wondered has anyone else had this experience or similar with a family member?

95% of the time it doesn't bother me, I have my own life, but then I do get times where it bothers me (like tonight for some reason!)

Lllizzie - yes, I've been in this situation so many times. I spent 6 months in hospital with sepsis because of something similar. Every condition I have had to be diagnosed privately. One hospital nearly killed me then shipped me to another.
Appreciate it's a tangent but unless you're at the mercy of these systems you could not begin to comprehend the level of incompetence, gaslighting and Munchausen accusations. I would never have believed all this had I not experienced such behaviour from so called professionals. Not accused of M thus far but suggesting all problems are anxiety is rife.

I fostered a child who had been removed by social services from their parent because of MBP. I won't go into the details of what the parent did to keep the child sick enough to be admitted to hospital regularly. The child never was returned to the care of their parent and went on to have a normal adulthood

I’ve seen it personally (someone I went to school with) and professionally. Raised concerns both times and escalated, and was met with a ‘we know but we can’t prove it’. 🙃

Agreed. I appreciate in some cases it is "fictitious" but equally I think people are far too credulous if they think the medical profession is getting it right all the time.

I am by no means alone at only just having got a diagnosis of a congenital condition when well into middle age. That's a whole life time of raised eyebrows and "goodness you get sick a lot" and gaslighting from doctors. All to discover that all this time I was phenomenal for pushing through as much as I did. And many people with my condition tell a similar story.

I expect there are old acquaintances /colleagues even now chuckling about how I was always ill. Maybe one of them is telling an anecdote on this thread. I would love to get them all in a room with my neurologist

It sounds sort of co dependent? like they are caught up in some pattern, but also I am no expert either!

Hi, within my role at work, I have worked with a number of families where fabricated Illness has been a factor. Whilst normally fabricated illness starts with 1 member of the family, often other family members become complicit in the fabricated illness. But this is due to them being drip fed information and it’s only when presented with a medical chronology do they begin to look at everyone’s worries. I suspect from your original post your brother is an adult and if this is the case then I would make a referral to adult safeguarding.

SpaghettiWithaYeti · Yesterday 22:06

When I read in the OP that the brother was in and out of a wheelchair, my heart actually went out to him, because that is quite common with people who are genuinely ill.

I have GBS/CIDP which many doctors never see in their working lives. I never heard of it. It is diagnosed by lumbar puncture. This disease is an inflammation of the central nervous system and can and does go up the body involved anything in it's path.

It is a rare disease, and any disease of the central nervous system will produce symptoms anywhere on the body. GBS goes up the body over a long time, affecting even the hairs on the body, so any and all kinds of problems may present. I believe that this is one of the diseases which were blamed on M/MBP, and I think that is more rare than anyone thinks. It is a very dangerous way to look at disease before every avenue is visited. Quite frankly I am appalled that it is even discussed now that medical knowledge is so much more than it used to be. You have to be very sure, actually see a parent do something to a child, before you can label them.

This !

I would bet money that the majority of M and MBP cases are genuine medical cases. I felt exactly this when I read about the wheel chair! Ehlers Danlos Syndrome does this. Autoimmune conditions do this. My autoimmune conditions do not show in my blood work ever. I read stories every day in all my health groups where real sufferers don't want to carry on anymore because of the gaslighting. It's getting worse. People need to realise how utterly horrendous many people become working in these professions. If you add apathy and resource constraints, it makes the gaslighting behaviour even worse.
I have a hideous neurological condition among others. Neurologists are the absolute worst I've ever encountered. The majority of the public would never or could never imagine so many people could be so clueless and behave so appallingly in these professions. It's unthinkable that they might lie, gaslight, etc.

Pantaloons99 · Today 18:04
I feel for you, I really do. I can exactly understand how life is for you. Do you belong to the Facebook groups? They are more knowledgeable that most medics - neurologists included. They injected dye into my spine for diagnosis and I was allergic to it. It is still going up and down the canal!

I know exactly what you mean. I haven't seen my neurologist for a long time. Once the nerves are attacked, there is little can be done. There are so many things that even medical people cannot understand. I cannot feel my feet. Last April the infection on my foot which I had since the September before, finally healed up. At first, no one would believe that I could not feel anything. I was given dose after dose of antibiotics, and local treatment, and each time it was treated I never felt it. Eventually I was referred to the podiatrist who worked very hard to heal it, but even she had never known no feeling at all on the surface. Now, of course, care is taken. They are used to diabetics having little feeling in the feet, but not mine. It is disheartening. I think the body is more weakened by past illnesses and succumbs to debilitating conditions. I think my 2nd and 3rd peritonitis were probably caused by having half the placenta left behind, despite constant bleeding for 7 weeks. Can you imagine imagining that?

Yes, my story is similar. I struggled my whole life , made to feel by many that was some kind of moral failing how much I struggled.

Like you my condition is rare. It's a neurological junction disorder and gets worse the more I use my muscles. So I can be well enough for a decent swim (for instance) in the morning but if I don't pace myself carefully I can be unable to open by eyes, move my limbs or speak or swallow by the end the same day. (Literally unable, theres no pain, my nerves simply cannot send messages to my muscles)

It wouldn't show up in any standard blood tests.

I expect many people battle on their entire lives without diagnosis, certainly my story of many decades from symptom onset to diagnosis is very common

I am really lucky, my local neurologist is a world specialist in my rare condition. Just one of those real strokes of luck. But through my Facebook group for the condition I know some neurologists are astonishingly behind on the science (like decades out of date)

SpaghettiWithaYeti · Yesterday 23:53

I do understand what you mean. I can't swallow sometimes and I asked on the facebook group if anyone else had the same and many of them do, so now I just suck baby food from the prongs of a fork. A spoon doesn't help. Also I cannot lie on my left side when the muscle in my neck goes, because the oesophagus just falls to the side and blocks the windpipe! I was being tested for pharyngeal pouch until I saw what the treatment was and cancelled. I would never have survived that. I swear I shall have a heart attack if I go through hospital doors again! Have you ever had the nerve go in your leg when you are lying in bed? The good leg touches it and although you know there is no one in bed with you, you have to look. I don't fall as expected. When the nerve goes, it just concertinas down and I don't have a leg to stand on!

I do feel sorry for the brother. I have been thinking of all the people who see me walking one day, then in the wheelchair - even in the house the next. I have a disabled living extension and the council lowered the council tax band, yet there are still people who cannot see anything wrong. Good thing too, because if I let my guard down, let my vulnerability show, I am defenceless, so if anyone queries my rights, I don't mind.

I'm sorry for the OP that this thread seems to have split and some with undiagnosed conditions appear to think it's impossible to have MSP. It isn't. I've seen it. Some people have a MH condition that causes them to do this to their child. Usually just one child.
These people can lie and do and carry it on for a lifetime.
Just because some people have had a terrible time being diagnosed and doctors aren't magicians and are not perfect does not mean that this isn't a real condition.
There's a horrific video of a mother who keeps suffocating her child with a pillow almost to the point of death. They no longer show it in safeguarding training I believe as it's too distressing.

I don't think anyone is disputing that it can happen. Just highlighting that it is very important to be alive to the fact that in most people you come across is far more likely to be an undiagnosed condition. And those of us commenting all have since been diagnosed, its just a long road and we are rightly angry at all the people.who doubted us along the way.

It's not unreasonable for us to continue to point this out. Particularly on a thread where people are commenting saying they "know" someone who was faking a condition and yet their "evidence" is as scant as fluctuating symptoms and a lack of diagnosis, many of which apply to very real conditions. It's utterly grim and traumatic being ill but not being believed.

It is utterly grim and traumatic being ill but not being believed.
It is utterly grim and traumatic knowing your child has SEN's but not being believed.
Not being believed wrongly at difficult periods of life is utterly grim and traumatic. Agreed, and cation should always be employed.

But, On top of everything else:
Do you tend to find your conditions suddenly flare if another relative is ill?
Do you reach for Go fund Me loudly for everything you need?
Especially if it's potentially quietly achievable through statutory funding or law?
Do you connect financial appeals for personal help to spreading the word of the gospel?
Do you do regular social media check ins from hospitals and engage prayer groups?
Do you not need your medication and aids at home? (I do realize sometimes a well set up home can reduce symptoms TBF)
Were all your wheelchairs and crutches not supplied by wheelchair services?
Have you no interest in working because you wouldn't know what to do, rather than because of pain or exhaustion?

On their own there are possible reasonable explanations for all the above, it's when they're put together it gets more odd.

Watch this for a little girl and her military nurse mum fundraising for a diabetes support dog for the rarest form of diabetes. Heartbreaking.
https://www.kltv.com/2018/11/16/year-old-diabetic-hopeful-diabetic-alert-dog/

Mum and brother (with hearing issues) needed help for her little gilrl who had to live her life around severe sudden low blood sugars and extreme diabetic seizures, leading to issues with blood vessels, kidneys, eyes, and nerves, endangering and destroying her life and her brothers.
She needed constant supervision and was affected by a large set of foods and her survival precarious.

Father however claimed these issues never present on his EO weekends and fed his child standard non diabetic diet, also that his son didn't wear hearing aid at home as hearing was fine, including in crowded places. Mother claimed father was dangerously un-suportive.

After one hospital presentation, an endocrinologist became suspicious. Mum mentioned an extensive military background and active service in Iraq, and diabetes since a young age herself, so knew what she was looking at in her child.
Endocrinologist, had previously been in the military himself, knew diabetes meant she wouldn’t be accepted into the military. (later confirmed she’d never served in the military.) Clinically impossible results suggested insulin poisoning.

He believed she was a standard nurse, and was-injecting daughter with insulin so make her appear hypoglycemic. She was told to stay in area but was taken to another hospital.
There the girl was placed in a room with a hidden camera. Her mother reported she’d been having seizures and vomiting, when staff weren’t present. The video showed not.

Person helping with (Church ) fundraising, later said she babysat three nights a week and allowed child to eat as she liked, no symptoms during those times.

Child said they had seizures when her blood sugar is low. Child said she wasn’t aware of her seizures; she would be told she had them. She said she only had injections with mum, not at dads. Not doing what mum said resulted in time out and removal of phone.

DD was fostered for four weeks, eating full range of foods, no signs of vomiting, hypoglycemia or diabetes. Four years on the picture remains the same, and son doesn't wear a hearing aid.

Ellen Rupp-Jones plead guilty to injury to a child, exploitation of a child and aggravated assault through using fast-acting insulin and glucagon to raise and lower her daughter’s insulin level at will, regardless of danger and damage.

Agreed, there are some cases where it is true. I never said their aren't. But so many people over the years have faced horrendous scepticism on top of a physical battle and we should be allowed to talk about it.

And.... To pick up some of your points.... yes my illness flares if someone else is ill because stress is a massive trigger. When my grandma died I actually couldn't swallow or move for several days. When my MIL died I again became very ill because I had to do the job of both parents and it broke my body. This wasn't attention seeking it was the inevitable consequence. I genuinely am very worried that if one of my children was seriously ill then the impact on me would give me a flare so bad I would end up in ICU. This is reasonably common with my condition. I know people this has happened to and it was devastating for them ,right when our families need us our bodies let us down.

I buy my walking aids outside the NHS because I have money and want nicer, better aids than they would provide.

I don't need my medication or aids if I am just at home because my condition is only bad then more I do. On a day of pottering around the house/resting I usually wouldn't need any medication or mobility aids.

I don't do go fund me etc because I am wealthy enough but I can see why people do. I would love an electric wheelchair for bad days but can't justify the expense and the NHS would say I can just rest on those days.

And I am lucky to have a very sedentary job and supportive work place but even then I find working incredibly hard in ways it is hard to articulate even to myself. And most people with my condition find that it is just impossible to both work and have any kind of quality of life.

So yes, all of that list could apply to people battling my condition without a diagnosis. Doesn't mean they don't have the condition, just means they don't have a diagnosis.

Yes MBP happens and is awful
But the converse is also much more common, there are many conditions that are hard to diagnose and poorly understood - my family is full of doctors and I went to see numerous GPs and none of them realised what I had for 20 plus years, despite it in fact being an illness that (although largely invisible) does have some very clear and specific visible symptoms (i cant fool my family or boss that i am well now they know the signs! So I get ordered to rest!)

And Very few people would have the ability or access to insulin etc to do what that mum did.

Fine to be alert to be possible of MBP but very important to also be alert to the fact many illnesses present as fluctuating, including exacerbations at times of stress.

(for avoidance of doubt , a close relative prosecuted some of very serious MBP cases. It's possible to agree that it exists and also point out that it's really damaging to genuinely ill people.when people assume a lack of diagnosis/fluctuating symptoms etc means someone isn't genuinely ill.)

And: Fine to be alert to be possible of MBP but very important to also be alert to the fact many illnesses present as fluctuating, including exacerbations at times of stress.

I agree and I do hear you, I really do. I am absolutely not seeking to stop you and others long term seeking diagnosis talking about it at all.

As someone who has themselves been accused of MBP (and is seriously disabled themselves so a red flag for it) I am both interested in the debate and conflicted as it feels like lots of parts of it are all sides and angles of the same coin.

I suffered from being the sibling of an 'interesting situation' and know what they did, but also know why, why they continued, and the legacy it left them. Unfortunately it left me and others with one too.

They are exter

Very few people would have the ability or access to insulin etc to do what that mum did. Agreed, but most use OTC medications, salt, and easily available items, alongside purchasing medical interventions to achieve extraordinary results.

Wendi Michelle Scotts daughter suffered from severe diarrhea, blood loss, vomiting, high fever, and a rapid heart rate. No cause could be found over three years and 72 procedures.
The tests left increased cancer risks from repeated radiological tests, developmental delayment, and danger of future emotional difficulties.

Mum had been reducing her blood volume by simply siphoning it out to cause some of the symptoms, while intravenously feeding high levels of OTC magnesium, as well as some basic food poisoning, to produce symptoms mimicking Leukemia.

Olivia Gant was 7. Originally treated for severe constipation and sent home.
But, mum then claimed she was unable to eat,, leading to numerous surgeries, then feeding tubes, and finally IV feeding via vein. Mum convinced dr’s to prescribe a heavy anti-seizure medication and between it left the child bed ridden or in a wheelchair.
She was on TV etc frequently for fundraisers for to complete memory makers and bucket lists, as mum said she was dying. As such she wanted her on a DNR.

Her Dr’s refused. So she swapped her care to Dr’s who would. She then had the feeding tubes removed and Olivia placed into a hospice.
She was fine at first, but as she slowly starved heavily medicated and with nothing but popsicle juice rubbed on her lips, her quality of life went downhill and she complained she was hungry to the end, as her body gave out.

Mum would have got away with it, she did for a year. But then she presented the younger daughter with the same symptoms, and the older one with bone pain.

Shauna Taylor* *poisoned her premature baby with OTC Paracetamol (Tylenol) and iron supplements, creating the acute liver damage she claimed.
Later two of her adult children who had been subjected to MBP blew the whistle on all of the families children having been being subjected to it as they started to realize the things they had been bought up to believe about themselves and claim to be unable to do or need funds for, just weren't true and they were living unnecessarily restricted lives for low financial returns.

None of this is an attack on those who feel they are medically ignored.

The situation you describe sounds difficult, but it doesn't sound like MBP. MPB would be if parents were deliberately harming their son to gather sympathy for themselves.

Like I say, a relative prosecuted some of the high profile cases.

Neither I nor anyone on here has said MBP.doesnt happen.

But what happens far, far more commonly is that people (most commonly women) battle for years with an illness and aren't believed. And even after diagnosis people are still sceptical if it is a fluctuating condition.

SpaghettiWithaYeti · Today 12:33
Elleherd · Today 12:15

I suppose Elleherd is responding to the original post, asking how many on this page had experience, I think there is always someone who fits the description, especially if it ends up in court, but the experience was very well investigated before a charge was made. The case described is so easy to diagnose now, and after the recent case of the injected babies by the nurse, they are taken seriously.

It is not the case with neurological conditions. People who suffer from neurological diseases are a curiosity to many. I was hit in the face by someone who was convinced I would not lose my balance. It has always puzzled me as to why people think that it is OK for them to have four mobile wheels, but not for wheelchair users. I have been told numerous times that ''you don't need that'' - my wheelchair, but all those who say that have cars. I never see them walking outside a shop!

I have a power chair because I had carpal tunnel ops on both hands. Every time I type I give thanks for the surgeon who enabled me to use my fingers, because talking gets difficult. I also have synthetic saliva to help me speak when my salivary glands won't work. They RARELY work when speaking to people I do not know, so I suppose there is some influence on my disease by other circumstances.

It is very discouraging when people are so ignorant, because that is what it is - ignorance. The last walking splints, sleeping splints and wrist supports I got from the NHS was January 2020 at the workshop. It cost me mileage and a carer for two visits while the walking splint was made. It was necessary, because that walking splint was just so much better than the other.

The NHS is only free if you live next door to a hospital and can get yourself there. It cost me over £100 for the two appointments. Once you know what splints/supports you need, you find them all on eBay or amazon, just the same. Sometimes the velcro sticks better on the eBay ones.

I wonder if people realise just how expensive it is to 'access' NHS treatment?