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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Blindness due to eating disorders. AIBU

35 replies

RedButBlueButBlack · 17/09/2019 23:46

As most of us would have heard about the poor boy who lost his eyesight & some of his hearing due to an eating disorder. I can’t help but wonder how this was allowed to happen. He had a b12 deficiencies which I have had it isn’t pleasant at all, my tongue was swollen, tingling in my hands & feet not to mention extreme fatigue. How could this have been missed.

He also had a low level of vitamin d. AIBU to think there is a bigger issue here. Would a vitamin D deficiency suggest lack of sunlight?

I am not suggesting anybody is at fault here I think mental health is being seriously Overlooked & cases like this are going to be heard of more & more.

OP posts:
Gingernaut · 17/09/2019 23:51

I suspect that because he was so young and he was eating, the problem wasn't diagnosed earlier.

It also sounds like he may have had some issues related to autism which would have affected how he related to the pain and how he communicated.

snowwhite90 · 17/09/2019 23:56

I have low levels of b12, folic acid and vitamin D. I have a relatively healthy diet my body just doesn't absorb them as it should. My doctor actually said that you don't get vitamin D from the sun you need to already have it in your body and the sun helps activate it! I know many people with b12 deficiencies that weren't aware for a long time. All that said it's still a very sad scenario for the wee boy.

Onacleardayyoucansee · 17/09/2019 23:56

I heard about this.
I read that the autism made it difficult to accept certain textures.
I guess everyone did what they thought was best at the time.
Things do get missed, its a real shame.

dollydaydream114 · 17/09/2019 23:57

Would a vitamin D deficiency suggest lack of sunlight?

Not necessarily - vitamin D is also found in red meat, eggs, oily fish and fortified cereals etc, which he wasn't getting in his diet. Over the winter most British people don't get all their vitamin D from sunlight at all. If he had recently started spending a lot of time indoors due to feeling physically ill all the time that might have been a factor too.

His vitamin deficiencies weren't 'missed', though - his doctors were well aware of them and prescribed him treatment for them. But he refused to take what was prescribed for him.

Original poster
RedButBlueButBlack · 17/09/2019 23:57

Perhaps that’s right. I do think there’s more to this story which should be told as it paints a very bad picture of his parents

OP posts:
Original poster
RedButBlueButBlack · 18/09/2019 00:04

@snowwhite90 maybe he has other reasons as to why he had deficiencies too. His levels must have been so low for this to happen bless him

OP posts:
Marcipex · 18/09/2019 00:09

It’s a very sad case but of course no one anticipated this extreme outcome.

zen1 · 18/09/2019 00:09

There was a thread discussing a couple of weeks ago. Several posters (including me) with children diagnosed with Arfid

www.mumsnet.com/Talk/am_i_being_unreasonable/3682485-To-be-surprised-this-kid-s-parents-haven-t-been-prosecuted

kateandme · 18/09/2019 00:17

noone cares about mental health.
his weight wouldnt have been low enough to get help (you have to be litereally dying the next day for them to think your ed is bad enough)
he was eating and in the eyes of eating disorders and mental health this means your still "well" enough so he wouldnt get help.
mental health is shit shit shit wanking shit for getting help.
thats it.
i wonder if he was blind from cancer.or a stroke.or.....oh i could go on.but no.a mental health illness,well fuck him.

zxcvhjkl · 18/09/2019 00:18

We've had a thread about this the other day. He has a combination of ASD, ADHD and a feeding disorder called ARFID plus something else iirc. I don't agree it is going to become more common because he didn't have a more usual straight forward eating disorder (which I think will become more prevalent) so in this particular case the level of mental health care doesn't really come into it. He wasn't refusing to take the medication because he was being stubborn or awkward he has medically recognised difficulties that made it very challenging for him.
It seems he had the perfect storm of challenges and it is of course very sad for all involved. The lack of understanding and compassion shown in some of the media when the story first broke was disgusting. Blaming parents, the NHS, the boy himself with no understanding of the challenges he faced.

Original poster
RedButBlueButBlack · 18/09/2019 00:25

@zxcvhijkl this is what I mean by there being other factors contributing to the outcome. In the initial story none of this was spoken of. It was simply stated he had issues with certain textures of food. How unfair to all involved to hold back this information

OP posts:
30to50FeralHogs · 18/09/2019 00:27

His vitamin deficiencies weren't 'missed', though - his doctors were well aware of them and prescribed him treatment for them. But he refused to take what was prescribed for him.

His mum tried to get him vitamin injections instead of the oral supplements he was offered but the GP refused injections, and as he couldn’t swallow the ones he was given he became very malnourished.

I was like most people, judging the parents when I heard the headline, but having seen the mum and son on This Morning I just feel bad for them both that they were ignored and overlooked, even though she clearly knew he needed help.

LookingForward2020 · 18/09/2019 00:42

I often wonder why you do not see these types of eating disorders (only eating one type of food, avoiding certain textures etc) in poor countries. Children there just seem to eat whatever is put in front of them. Maybe it’s underreporting. Or too much choice in wealthier countries/ communities.

LookingForward2020 · 18/09/2019 00:43

Not blaming this family by the way as I obviously don’t know the full picture. Poor boy.

ProhibitedRodent · 18/09/2019 00:47

@RedButBlueButBlack it paints a very bad picture of his parents

Incorrect. His parents fought hard for help from NHS

MonChatEstMagnifique · 18/09/2019 00:48

but having seen the mum and son on This Morning I just feel bad for them both that they were ignored and overlooked, even though she clearly knew he needed help.

Yes. The interview on This Morning certainly showed things very differently to how many news outlets were portraying it. It sounds like they were let down, it's a very sad case.

JanMeyer · 18/09/2019 00:58

I often wonder why you do not see these types of eating disorders (only eating one type of food, avoiding certain textures etc) in poor countries. Children there just seem to eat whatever is put in front of them. Maybe it’s underreporting. Or too much choice in wealthier countries/ communities.

Restricted eating is common in autistic children, it's nothing to do with too much choice. It's a combination of sensory issues and autistic people having very rigid thinking and dislike for change.
Do you think there aren't autistic children in poorer countries?
Of course there are, but they're much less likely to be diagnosed, that's if they even survive early childhood. Because such children will never simply "eat whatever is put in front of them", no matter how hungry they may be. Children with such problems aren't merely fussy or difficult. Yoù obviously have no idea about autism and the sensory issues that come with it.

Original poster
RedButBlueButBlack · 18/09/2019 09:09

@ProhibitedRodent you need to read my whole statement. I said there’s more to this story such as the disorders that were not stated in news paper articles. They need to be told because Without that information his parents do look bad

OP posts:
user87382294757 · 18/09/2019 09:16

You can get liquid vitamin drops to put in food and drink if your child won't take them. I know as mine son't so got them at the health food shop. So there are better ways than injections. (which I understand are used if say the gut doesn't work properly). Maybe some more support could have helped with that, perhaps.

Seeline · 18/09/2019 09:24

I thought the story was handled very badly by all the news sources at the time. Even the BBC news led with something like 'Doctors warn against the dangers of fussy eating as boy goes blind'! I mean FFS, not liking broccoli or hummus is hardly a major health concern. I think the whole family was treated very badly by the media. And as others have pointed out, obviously didn't get they needed from the professionals.

Goawayquickly · 18/09/2019 09:25

lookingforward there certainly are eating disorders in poorer countries, but bear in mind the ‘thin ideal’ of the west is not the ideal elsewhere. But cases of Anorexia have been found in rural areas of developing countries, why would we hear much about them though really? There’s lots goes on elsewhere we don’t hear about unless we go looking for it.

Kokeshi123 · 18/09/2019 09:27

Serious question, but was paying privately for help not an option for either of these families if the NHS was being useless?

x2boys · 18/09/2019 09:30

My son has severe autism and learning disabilities, his diet is fairly limited,he eats a lot of noodles ,whilst I'm not delighted about this ,it's not a question of just putting something in front of him and he will eat when he's hungry ,he just wouldn't eat ,he will take those children's multi vitamins in gummie form as he thinks it's a sweetie but I struggle to get other meds into.him ,I think the case is more complex than the papers are reporting and there was something more going on .

Comefromaway · 18/09/2019 09:32

I'm pretty well off but stuff like this is not an easy ride, it's long term and fraught with difficulties. My brother is trying to arrange private treatment for my nephew for bowel issues and is getting nowhere, he can''t even get a referral. Even if you could find someone the ongoing cost would bankrupt the average family.

MonChatEstMagnifique · 18/09/2019 09:34

Serious question, but was paying privately for help not an option for either of these families if the NHS was being useless

They shouldn't have to pay and who knows if they had the finances to pay for it. Also many people have total faith in the NHS so may think that if they are not being offered more help everything must be under control. They were let down.

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