17 yr old goes permanently blind and deaf from avoidant restrictive food intake disorder (ARFID)

[Pea-n-Me]

Now documented in medical literature: Teenager develops permanent blindness, deafness and bone disorders from eating a diet consisting of just French fries, Pringles potato chips, white bread and sausage for a decade. Has to drop out of school because he can't see or hear, and mother has to quit job to care for him at home full time. What a disaster for this young man and his family!

https://www.msn.com/en-sg/health/me...ood-diet-report-reveals/ar-AAGI0Y3?li=AAaGkVj
Edit: detail correction

 

[Hikergirl]

So he was diagnosed with this disorder in primary school and by the time he was 14 he started having issues?
Was he being treated for that disorder other than some B12 shots?
Seems like he was allowed to continue to eat poorly instead of his parents doing some serious intervention.
What a shame for him.

 

[Pea-n-Me]

So he was diagnosed with this disorder in primary school and by the time he was 14 he started having issues?
Was he being treated for that disorder other than some B12 shots?
Seems like he was allowed to continue to eat poorly instead of his parents doing some serious intervention.
What a shame for him.

He first presented with fatigue, and was treated with vitamins and dietary advice, according to articles. They did not make the connection that his blindness was dietary related because his BMI was ok. Normally this type of thing is not seen in developed countries, so it's very rare; in fact, this was the first documented case in the U.K.

Here is an article with a more medical detail:

http://www.bristol.ac.uk/news/2019/august/diet-study.html
Medical experts, based on this case, are now recommending that nutritional optic neuropathy be considered when patients present with unexplained vision problems.

 

[Hikergirl]

He first presented with fatigue, and was treated with vitamins and dietary advice, according to articles. They did not make the connection that his blindness was dietary related because his BMI was ok. Normally this type of thing is not seen in developed countries, so it's very rare; in fact, this was the first documented case in the U.K.

Here is an article with a more medical detail:

http://www.bristol.ac.uk/news/2019/august/diet-study.html

Still though, he was diagnosed with the disorder in primary school (according to the first article) and it seems he was still allowed to eat extremely poorly for many years after that.
I stand by what I said, it is a shame that his parents didn't do a more aggressive treatment for it.

 

[Pea-n-Me]

Still though, he was diagnosed with the disorder in primary school (according to the first article) and it seems he was still allowed to eat extremely poorly for many years after that.
I stand by what I said, it is a shame that his parents didn't do a more aggressive treatment for it.

Oh, I see what you're saying - that he was diagnosed with ARFID in primary school. Yes, it looks that way. I thought you were talking about the nutritional optic neuropathy (NON), which wasn't diagnosed until he was 17. But yes, he needed to be eating a more varied diet all those years to avoid the damage that his body ultimately suffered. I think it's true that many people who have children with these disorders think if a child's weight is ok, everything's fine. But there can be things going on inside the body that can't be seen. At one point this boy's NON could've been reversible, but it continued to a point that it's no longer reversible. Such a shame, is right. I hope that the example set by this case is taken seriously by others who may find themselves in a similar situation.

 

[barkley]

Seems like he was allowed to continue to eat poorly instead of his parents doing some serious intervention.
What a shame for him.

i feel the same. a parent should realistically be aware of what their even teen is consuming (we do tend to buy the groceries and see what's being eaten by whom and not within our own homes). if a person has a kid who is only eating the diet described in the article then common sense would say to follow the dietary advice that was previously medically recommended.

i've got a food phobic kid (asd diagnosis) so i know it's very hard to get someone to eat what they don't want to but that doesn't stop me from NOT buying the stuff or drastically limiting the stuff that a pure diet of would cause issues with. unless this kid for the last decade was the sole person who purchased and prepared his own meals then the parents have some responsibility for the sad outcome.

 

[usnuzuloose]

To many people just feed the kids junk. And they give in so tthey don't have to fight with kids. I knew someone who allowed the child to eat pasta and junk food until the dr. said he was going pre diabetic. This is why you give children proper nutrition that they need.

 

[PollyannaMom]

Oh, how sad!

 

[DLgal]

I don't understand how bloodwork wasn't regularly done on this kid to check for deficiencies. Also, did the parents not give a multivitamin, at least? My kids are autistic and have limited diets, but thankfully they will eat some things from all food groups and fruits and veggies (at least in smoothie form for one of them). However, because of their limited diet, they have had regular blood draws (annually) to check and make sure everything is good. One has a tendency towards anemia which we fixed with some iron supplements. I just don't understand how this kid's health was able to deteriorate to this point. Crappy doctors, I guess. Or the parents were not honest about how limited the diet actually was.

 

[ronandannette]

So he was diagnosed with this disorder in primary school and by the time he was 14 he started having issues?
Was he being treated for that disorder other than some B12 shots?
Seems like he was allowed to continue to eat poorly instead of his parents doing some serious intervention.
What a shame for him.

Absolutely - not only allowed to, I'd say actively facilitated. This kid was 7 when the diagnosis was made - children that age do not procure their own food supply. We've had several high-profile cases locally of parents being prosecuted for a variety of acts that constitute a violation of the legal requirement to "provide the necessities of life" for children. This case would undoubtedly be looked at very carefully by CPS and law enforcement with a strong possibility of the parents being charged.

 

[bobbymcco]

So glad that the greatest medical minds are on the Dis boards, As someone who has a child with food and stomach issues. In fact he has been on a feeding tube since last November, I'm sure people like this one "
Seems like he was allowed to continue to eat poorly instead of his parents doing some serious intervention.
What a shame for him. " know that we should do, just should just shove food down our kids throat. My son went 48 hours without eating because of this, so tell me how I was going to make him eat. Also our doctors informed us that if we forced fed him we could have more food issues, so please tell me how we should treat him? Because I'm sure that you know what everyone should do.

 

[LSUmiss]

So glad that the greatest medical minds are on the Dis boards, As someone who has a child with food and stomach issues. In fact he has been on a feeding tube since last November, I'm sure people like this one "
Seems like he was allowed to continue to eat poorly instead of his parents doing some serious intervention.
What a shame for him. " know that we should do, just should just shove food down our kids throat. My son went 48 hours without eating because of this, so tell me how I was going to make him eat. Also our doctors informed us that if we forced fed him we could have more food issues, so please tell me how we should treat him? Because I'm sure that you know what everyone should do.

I’m sorry for your situation. DS was born with a digestive birth defect so we deal with issues too. But, in this case, surely there would have been medical interventions like supplements or vitamins??

Also, perhaps not this case, but I have seen my own relatives allow their child to eat ice cream/dessert before even touching the meal b/c it was easier & they wanted to keep him quiet at dinner. Needless to say that kid still doesn’t eat like he should at all.

 

[bobbymcco]

From reading the story they were giving him supplements, It was the same with my son. The eye doctor put him on supplements for his eyes.

 

[LSUmiss]

From reading the story they were giving him supplements, It was the same with my son. The eye doctor put him on supplements for his eyes.

Did your son get a feeding tube b/c of this?

 

[bobbymcco]

Yes, he was a poor eater when we was younger, but now days the throws up when he eats most foods.

 

[LSUmiss]

Yes, he was a poor eater when we was younger, but now days the throws up when he eats most foods.

I’m so sorry. That must be awful. But couldn’t/shouldn’t the parents in this story have taken similar steps that you had to take for your son rather than letting his situation deteriorate like they did?

 

[bobbymcco]

we don't know that they didn't, I feel that the story is not telling the whole story>

 

[ronandannette]

So glad that the greatest medical minds are on the Dis boards, As someone who has a child with food and stomach issues. In fact he has been on a feeding tube since last November, I'm sure people like this one "
Seems like he was allowed to continue to eat poorly instead of his parents doing some serious intervention.
What a shame for him. " know that we should do, just should just shove food down our kids throat. My son went 48 hours without eating because of this, so tell me how I was going to make him eat. Also our doctors informed us that if we forced fed him we could have more food issues, so please tell me how we should treat him? Because I'm sure that you know what everyone should do.

I guess I don't know exactly but I implore you to figure it out before your child goes blind and deaf from malnourishment, as I'm sure you and your medical team will do. In fact, I'd bet money the nutrition delivered through the feeding tube is doing that right now.

 

[mummabear]

i've got a food phobic kid (asd diagnosis) so i know it's very hard to get someone to eat what they don't want to but that doesn't stop me from NOT buying the stuff or drastically limiting the stuff that a pure diet of would cause issues with. unless this kid for the last decade was the sole person who purchased and prepared his own meals then the parents have some responsibility for the sad outcome

A good friend has a food phobic kid, he goes to weekly sessions to try and get him used to the food, being in the same room, touching it, putting it to their lips, then on their tounge etc
However they have also said hungry kids kids eat, unless you give them enough emotionally for it to be worthwhile starving.
It is one thing if the few things they want to eat are healthy or reasonably healthy.
I would have a lot more understanding of how a parent could have let it get do bad if the kid had only been eating pasta, corn and apples rather than junk food.

So glad that the greatest medical minds are on the Dis boards, As someone who has a child with food and stomach issues. In fact he has been on a feeding tube since last November, I'm sure people like this one "
Seems like he was allowed to continue to eat poorly instead of his parents doing some serious intervention.
What a shame for him. " know that we should do, just should just shove food down our kids throat. My son went 48 hours without eating because of this, so tell me how I was going to make him eat. Also our doctors informed us that if we forced fed him we could have more food issues, so please tell me how we should treat him? Because I'm sure that you know what everyone should do.

Sure I'm not going to force feed them, but that doesnt mean you have to supply them the food they demand.
Again, if he was eating boiled potatoes rather than french fries and crisps.

My nephew went through a phase where he would only eat white food. That meant rice, cauliflower, mashed potatoes, not just allowing him to eat vanilla ice cream.

 

[a1tinkfans]

Very sad, actually heartbreaking!