Found out my 14 year old has ARFID?

When my daughter was little she had issues with aspiration. We were lucky enough to avoid the g-tube with thickened pediasure. We did feeding therapy after treating her reflux, including "forcing" her to take bites of foods when she refused. This took a significant amount of effort, and she would throw tantrums at, before and after the sessions. She would only eat something other than pediasure during therapy with a lot of pressure. We ended feeding therapy at age 11. She's now 14 and her diet is still exclusively pediasure. We had her 14th birthday party at our house with no cake because she won't eat it. We had games and treats for the guests. She won't eat at school, at birthday parties, even when encouraged. The only time she had a normal diet is when we went on vacation last week. She ate everything from tilapia, soup, cake, salad, pizza, etc. Our vacation is for a week. When we got back I offered her the same foods and she refused. I have tried just taking away her pediasure (which I have to remind her to drink) and she will just starve herself. I wasn't sure if this was normal rebellion or an eating disorder. I googled teens and eating disorders and most of what I read talked about anorexia and bulimia the desire to be thin. My daughter does not fit these descriptions. I posted on another and someone mentioned ARFID. I googled this acronym and it described my daughter. I googled teens and AFRID I found out that it's not all that uncommon. I am very mad that ARFID wasn't mentioned in my google searches. Why do people talk about wanting to be thin but not this? This is also an eating disorder. Someone on the forum said I have to go to the kartini clinic in Oregon for the best care, as professionals have very little idea on how to treat entrenched ARFID. I read on one site 63% of pediatricians and pediatric specialists don't know about ARFID. I am furious. So maybe that's why it's not discussed.

Another thing is getting my husband on board. My husband doesn't believe in mental illness. For example, one of his relatives was in a manic episode. She quit her job thinking she will be very famous. My husband insisted her parents needed to kick her out and she will learn being on the street. I explained she's bipolar but he refused to accept this. Then when she was hospitalized and started taking medication my husband said she was fine before being hospitalized. He will also tell depressed people to go out more, because that's what he does when he's "depressed." When I told him out daughter has ARFID he said he told our daughter to eat regular food many times and she doesn't listen. I said you can't talk someone out of an eating disorder. We had an argument where he said I was just making excuses for her.

I also learned over the years you can't trust professionals. No one brought up ARFID. Maybe if I just googled eating disorders and not teens and eating disorders I would have discovered this sooner. Heck many articles on eating disorders don't even mention ARFID. Why? This makes me so angry. Why do some eating disorders get attention and not others? I am not even sure how to get her help. I am in the DC area and I heard Johns Hopkins treats eating disorders.

Hello Lorii: Thanks for sharing your experiences regarding your daughter's eating disorder. I see this is your first post here on PC. So... welcome to PsychCentral! I hope you find PC to be of benefit.

I myself am not familiar with ARFID. But that's not surprising since I don't really know that much about psychology in general or eating disorders in particular. Hopefully though there will be other members, here on PC, who will have some experiences with this condition they can share.

Here's a link to a YouTube video by family therapist Kati Morton on the subject of ARFID



Since you mentioned the problems you've had with your husband's views on mental illness one additional forum, here on PC, that may be of interest to you would be the relationships & communication forum. Here's a link:

https://forums.psychcentral.com/rela...communication/

My best wishes to you & your family...

I am sorry it was so hard to get the proper diagnosis and for everything you and your daughter are going through.You could look Sheppard Pratt if you are in the DC area, since they have a clinic for eating disorders, and it mentions the dx as something they treat. It is in Baltimore, MD so not too far away. Not trying to endorse a specific place, and cannot speak to the treatment. I just heard of the hospital and wanted to pass along.

https://eatingdisorder.org/the-center/who-we-treat/

It seems like there does need to be more awareness of this ED from what you are saying. It appears to be a relatively new dx in the DSM 5 that expands on the previous diagnostic category of feeding disorder of infancy and early childhood from what I read. That could explain some of the reason it is not as widely known, in fact I had an eating disorder and hadn't heard of it until now officially, although I have heard of some of those symptoms before in individuals. Either way, you it seems like you are right there needs to be more awareness. Hope your daughter gets the help she needs.

Hi. I'm not actually diagnosed with Avoidant/Restrict Food Intake Disorder (because my problem is probably in response to sensory processing issues) but other than the cause, it does apply to me.

I never heard of ARFID until I was looking through the DSM recently (I'm a dork, I know) and stumbled upon it. It is brand new to the DSM-5 so it didn't exist before 2013, which is probably why almost no one, even doctors, know about it. It's also not that common so doctors are less likely to know about it anyway, they're most likely to dismiss it as being a picky eater.

As I've had food issues for about 30 years and I''ve seen the repercussions of it, I'm begging you to bring your daughter for an official diagnosis and to get help.

I can't speak for others but I can say that in my experience, my food issues have done a lot of damage. The biggest problems are:
- I'm ostrasized at meal times and at family events/holidays since I either don't eat, I have incredibly small portions that I force myself to eat, or I only eat one or two things. Because all holidays and celebrations center around food, I hate them with a passion and actively avoid them.
- I get made fun of a lot by family and friends when it comes time to eat out. They always ask me where to go because I'm "so picky" and then mock me because I order the same exact thing every time... Then there's how I eat things... Like when I finally started eating "sushi" (I only eat California Rolls so there's nothing raw), I wouldn't eat the seaweed so I'd eat the insides then scrape the rice off the seaweed to eat it. It was time-consuming. The amount of ketchup I put on burgers always gets commented on and I've gotten to the point where I have to hide my plate when I add salt to my food because I'm sick of the commentary about the enormous amount I use.
- Longer social interactions (and dates) usually inspire anxiety and dread that they'll end up including sharing a meal together. Yeah, I may be hungry but if there's nothing on the menu I'll eat, I just sit there in misery. And rather than a nice Valentine's Day dinners, I usually end up at Moe's picking bits and pieces to eat out of their veggie burrito or at McDonald's with my usual order.
- Nutritional problems galore. I generally don't eat meat, which is humans' main source of Vitamin B12... B12 is necessary for balance and energy... My levels were so low in college that I had to have weekly injections of liquid B12. And, needless to say, I have almost no balance and my energy runs out very quickly.
- I've come to hate all mealtimes and I always dread them. Imagine having to deal with something you dread, something that makes you miserable, 3 times a day every day. Even when it's just me, it's miserable. I'll often forget about eating (made worse by my inability to tell when I'm hungry) until I get lightheaded. That definitely can't be good for me.

So yeah, it's important to deal with her food issues now before they cause life-long problems because dealing with this stuff as an adult just plain sucks.