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

[NYCgrrl]

Permanently blind due to poor eating habits.
Just sad.

 

[barkley]

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.

ds is 22 and i've learned over the years that if he's truly hungry he will eat something-might not be his first, second or third preference but if i just let him limit himself to those he would consume nothing but processed junk food. he has gotten better, i think in large part b/c we've spent time getting him to try things he's already eaten before but doesn't realize comes in a variety of forms that can be prepared in a healthier manner-would eat a burger so we told him steak is a burger before it's ground up, roast is uncut steaks, ham is an unground smoked sausage...it's opened him up to try more and find he likes more than he thinks he does.

this week was astounding-he tried and found he likes grilled chicken if he has marinara to dip it in worship:finally-a form of chicken not breaded or deep fried) and was open to trying a piece of lamb (jury is still out on that). we are planning on going to a restaurant (chain) when we travel to orlando in december that we've not been to in about 5 years but used to frequent when we lived local to one-pointed out to him that for years he would order only bean burrito/rice/beans but because he's branched out and tried new things he can look forward to enchiladas, chimichangas and tamales (which i detest the texture of but he very much enjoys).

 

[Hikergirl]

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.

Those of us who have experience with eating disorders just may know.
In the case the OP posted about, that kid was allowed to continue to eat poorly and now he is blind and deaf because of it. There is no beating around the bush here, had he been treated for his disorder that would not be the case.
I'm sorry for what you are going through but I am not sorry for feeling that a parent is responsible for their child's care. Sometimes that does mean serious intervention- especially with an eating disorder. And yes some if us do know that. Good luck to you and your son.

 

[holden]

An eating disorder is often a mental illness. There are treatment programs, therapists, etc that have good results. I know several people who have gone through such programs it’s a life-long struggle but with support many people can get better.

 

[ronandannette]

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

As we’ve established, I’m no medical professional and I’m curious about something: Why is this condition not prevalent in severe anorexics? I’ve not known anyone personally but when seen in the media, some of them are absolutely skeletal and they often die from heart attacks or organ failure due to their bodies “consuming” themselves. This boy apparently had a relatively normal weight (obviously due to the calorie density of the crap he ate) but wouldn’t an anorexic who ate virtually nothing actually be at greater risk? Maybe they are and I’ve just never heard of it. Please comment.

 

[LSUmiss]

As we’ve established, I’m no medical professional and I’m curious about something: Why is this condition not prevalent in severe anorexics? I’ve not known anyone personally but when seen in the media, some of them are absolutely skeletal and they often die from heart attacks or organ failure due to their bodies “consuming” themselves. This boy apparently had a relatively normal weight (obviously due to the calorie density of the crap he ate) but wouldn’t an anorexic who ate virtually nothing actually be at greater risk? Maybe they are and I’ve just never heard of it. Please comment.

I was wondering this too. I was wondering if it has more to do with the age of onset & interfering w/ development. Seems this kid had been doing this for years from a young age. Usually anorexia doesn’t start that early.

 

[mnrose]

I feel for all involved. ARFID is a very poorly understood form of eating disorder. And very difficult to treat, like all eating disorders. I know because my daughter suffered from restrictive anorexia when she was 13 (she is now in a good solid recovery, but it took YEARS of aggressive treatment). If I had a dollar for every person who said to me during that time "just make her eat"...I'd be a very, very wealthy person. How, exactly, do you DO that. Do you hold them down and shove food in their mouth? It's not easy. It's not simple. And, it's an ILLNESS that needs treatment. Not a matter of the person simply "refusing" to eat. They CAN'T eat without causing tremendous anxiety and stress. Eating is the hardest thing in the world for them to do. Think of the scariest thing YOU can imagine....now imagine being FORCED to do that thing 4-5 times a day for the rest of your life. That's what eating is like for someone with an eating disorder..absolutely panic inducing. Because the FEAR center of their brains (fight or flight) light up when confronted with food...for you and I, who LIKE to eat, it's the pleasure center. Very different.

With a kid with ARFID, it's tricky. There are things they WILL eat, and outside of those things, they simply will NOT. Vitamins and supplements included.

Treatment is available, but not in all countries and areas. In this field, we have a saying that "bad treatment is worse than no treatment at all" and it could very well be that this young man and his family had BAD treatment. If the parents were getting treatment (and it sounds like they were) and it was "bad" then, why are we shaming them? Good grief.

Unless you've walked in these shoes, just please shut up. You have no idea. None at all.

 

[mnrose]

As we’ve established, I’m no medical professional and I’m curious about something: Why is this condition not prevalent in severe anorexics? I’ve not known anyone personally but when seen in the media, some of them are absolutely skeletal and they often die from heart attacks or organ failure due to their bodies “consuming” themselves. This boy apparently had a relatively normal weight (obviously due to the calorie density of the crap he ate) but wouldn’t an anorexic who ate virtually nothing actually be at greater risk? Maybe they are and I’ve just never heard of it. Please comment.

I would think a severe anorexic would die before this condition was manifest. It could also be that the age of onset for this young man was at a particularly crucial time in development. Most anorexics experience onset between 11-15 years old, which is a different stage developmentally.

I've personally never heard of blindness or deafness from anorexia (and I know a LOT of people afflicted by this because of my experience as a caregiver of my daughter). Doesn't mean it hasn't happened. Just that I think it's rare for anorexics. Death is a relatively common outcome for them however.

 

[Cannot_Wait_4Disney]

 

[DLgal]

I would think a severe anorexic would die before this condition was manifest. It could also be that the age of onset for this young man was at a particularly crucial time in development. Most anorexics experience onset between 11-15 years old, which is a different stage developmentally.

I've personally never heard of blindness or deafness from anorexia (and I know a LOT of people afflicted by this because of my experience as a caregiver of my daughter). Doesn't mean it hasn't happened. Just that I think it's rare for anorexics. Death is a relatively common outcome for them however.

My cousin developed pretty severe epilepsy as a result of anorexia. She was about 14, I want to say. She is now in her early 20s, and no longer anorexic, but still has epilepsy. She can't get a driver's license, had to live at home to attend college, etc. It was pretty impactful.

 

[Cannot_Wait_4Disney]

As we’ve established, I’m no medical professional and I’m curious about something: Why is this condition not prevalent in severe anorexics? I’ve not known anyone personally but when seen in the media, some of them are absolutely skeletal and they often die from heart attacks or organ failure due to their bodies “consuming” themselves. This boy apparently had a relatively normal weight (obviously due to the calorie density of the crap he ate) but wouldn’t an anorexic who ate virtually nothing actually be at greater risk? Maybe they are and I’ve just never heard of it. Please comment.

Anorexics don't get enough calories to sustain them. This kid wasn't getting proper vitamins and minerals (Low B12, Selenium, Copper, D,)

 

[Hikergirl]

I feel for all involved. ARFID is a very poorly understood form of eating disorder. And very difficult to treat, like all eating disorders. I know because my daughter suffered from restrictive anorexia when she was 13 (she is now in a good solid recovery, but it took YEARS of aggressive treatment). If I had a dollar for every person who said to me during that time "just make her eat"...I'd be a very, very wealthy person. How, exactly, do you DO that. Do you hold them down and shove food in their mouth? It's not easy. It's not simple. And, it's an ILLNESS that needs treatment. Not a matter of the person simply "refusing" to eat. They CAN'T eat without causing tremendous anxiety and stress. Eating is the hardest thing in the world for them to do. Think of the scariest thing YOU can imagine....now imagine being FORCED to do that thing 4-5 times a day for the rest of your life. That's what eating is like for someone with an eating disorder..absolutely panic inducing. Because the FEAR center of their brains (fight or flight) light up when confronted with food...for you and I, who LIKE to eat, it's the pleasure center. Very different.

With a kid with ARFID, it's tricky. There are things they WILL eat, and outside of those things, they simply will NOT. Vitamins and supplements included.

Treatment is available, but not in all countries and areas. In this field, we have a saying that "bad treatment is worse than no treatment at all" and it could very well be that this young man and his family had BAD treatment. If the parents were getting treatment (and it sounds like they were) and it was "bad" then, why are we shaming them? Good grief.

Unless you've walked in these shoes, just please shut up. You have no idea. None at all.

Sorry, not going to shut up about this. You are free to speak your oprinions based on what you are going through, so are the rest of us. We don't need to agree but you have no right to tell others to shut up because you don't like what you are hearing.

 

[LSUmiss]

Sorry, not going to shut up about this. You are free to speak your oprinions based on what you are going through, so are the rest of us. We don't need to agree but you have no right to tell others to shut up because you don't like what you are hearing.

Agreed & like pp mentioned his/her DS has a feeding tube so there seems to be some treatments even if extreme to prevent the situation from OP.

 

[Searc]

Sorry, not going to shut up about this. You are free to speak your oprinions based on what you are going through, so are the rest of us. We don't need to agree but you have no right to tell others to shut up because you don't like what you are hearing.

All I hear is people blaming the parents. There is zero empathy for parents dealing with eating disorders in their children.

 

[Pea-n-Me]

As we’ve established, I’m no medical professional and I’m curious about something: Why is this condition not prevalent in severe anorexics? I’ve not known anyone personally but when seen in the media, some of them are absolutely skeletal and they often die from heart attacks or organ failure due to their bodies “consuming” themselves. This boy apparently had a relatively normal weight (obviously due to the calorie density of the crap he ate) but wouldn’t an anorexic who ate virtually nothing actually be at greater risk? Maybe they are and I’ve just never heard of it. Please comment.

In a quick literature review, Anorexia Nervosa does appear to be one of the risk factors for Nutritional Optic Neuropathy, but there are others, as well.

From the National Institutes of Health:

Nutritional optic neuropathy (aka deficiency optic neuropathy) is a dysfunction of the optic nerve resulting from improper dietary content of certain nutrients essential for normal functioning of the nerve fibers. Most commonly, it results from folic acid and vitamin B complex deficiency associated with malnutrition or poor dietary habits, incorrectly applied vegetarian diet, or chronic alcohol abuse. Obese patients after bariatric surgery constitute another risk group of optic neuropathy. Nutritional optic neuropathy is characterized by painless, gradually progressing, bilateral and symmetrical decrease in visual acuity, which can be accompanied by the color vision dysfunction. Progression of the neuropathy is associated with optic nerve atrophy, manifesting as complete disc pallor. Treatment of nutritional neuropathy includes dietary supplementation, aimed at compensating for the deficient nutrients. The treatment is mostly based on folic acid, vitamin B complex, and protein replacement, as well as eliminating risk factors of neuropathy. Early treatment commencement, prior to irreversible optic nerve atrophy, is a prerequisite of effective treatment.

https://www.ncbi.nlm.nih.gov/pubmed/25345287
From the International Journal for Eating Disorders:

Objective:
To report a case of severe reversible vision loss in a woman with a 7‐year history of anorexia nervosa, purging type, alcohol abuse and a severely restricted, vitamin‐deficient diet.
Method:
Psychiatric, ophthalmologic, and medical records were reviewed, and a literature search was performed on visual complications associated with anorexia nervosa and malnutrition.
Discussion:
Ophthalmologic complications of malnutrition are rare but include both oculomotor and visual sensory disturbances. Thiamine deficiency can cause both types of disorders. Vitamin B12 and folate deficiencies are typically associated with optic neuropathy. Clinicians treating eating disorders should be aware of the potential for vitamin deficiencies and associated visual loss in patients with anorexia nervosa. This case highlights the importance of a detailed dietary history to guide vitamin rehabilitation and to minimize or reverse nutritional visual loss.

https://onlinelibrary.wiley.com/doi/abs/10.1002/eat.20806
My guess is that with AN, since it's a visible illness, the need for nutritional therapy is probably more easily recognized. In boy in the OP's case, it wasn't. I also wonder if with the binge and purge type, people do actually get some nutrients. From personal experience with a friend who had AN, she ate a variety of foods, but in very small amounts, whereas this boy ate foods that had very poor nutrional value.

The biggest surprise for me here is that people eating a vegan diet can be prone to this. But good to know.

 

[Pea-n-Me]

As to the most recent comments, I think a discussion about this is a good thing. Maybe someone will recognize the problem in someone they know and that person can get help for it. How can that be a bad thing?

I do understand that parents feel judged in this area, but we've also seen here on this thread some posters becoming aggressive toward anyone who wants to even bring it up!

I'll ask that people be respectful when posting here, otherwise you don't need to participate if you don't want to, or it bothers you. I daresay, though, that if you've traveled this road, you have good information to share. I've already learned some things here, so thanks.

To the poster whose child has a feeding tube, may I ask why, as there are many reasons for needing a feeding tube.

 

[Hikergirl]

All I hear is people blaming the parents. There is zero empathy for parents dealing with eating disorders in their children.

So are his parents not responsible for his healthcare, mental and physical?
Does him having an eating disorder somehow make it so they aren't?

 

[DLgal]

All I hear is people blaming the parents. There is zero empathy for parents dealing with eating disorders in their children.

I think people are also blaming the doctors in charge of this young man's care. I know I am questioning his medical care. This is an unfortunate side effect of socialized medicine sometimes.

 

[Searc]

So are his parents not responsible for his healthcare, mental and physical?
Does him having an eating disorder somehow make it so they aren't?

Parents are not responsible for their children's eating disorders, with the rare exceptions of abuse. Full stop.

 

[Hikergirl]

Parents are not responsible for their children's eating disorders, with the rare exceptions of abuse. Full stop.

I see, so you resort to a strawman argument instead of answering the actual question I asked.
That;s OK, your obvious attempt at deflection is answer enough. You clearly know parents are responsible for their childen's healthcare you just don't want to say so. Worried you might be accused of not having empathy perhaps