Anyone have experience with ARFID?

amother

Linen

Tue, Feb 13 2018, 4:42 pm

FranticFrummie wrote:

OP, this is an excellent thread.

Linen, thank you so much for sharing your info with us.

Looking at the list, I think that I have many of those issues, but do not meet the clinical requirements. My case is much more complicated, because I have underlying health issues.

Everyone, please listen to Linen, she knows her stuff better than I do.

Thanks for the endorsement FF.
It's so sad how little knowledge there's out there about ARFID.

I did not post every detail but suffice it to say that across the spectrum, from organizations and Rabbis "specializing in ED" up to my childs pediatrician, nobody knew the word ARFID!

The worst two responses I got from people I turned to for guidance were;

1. "New names for eating disorders develop daily but all EDs are the same." What

2. "Mrs. Linen! You think you know something about ED but you know nothing!!!"
(In response to me trying to explain myself that I need a referal to an ED specialist that knows ARFID because this kid has no concern with body image and does not vomit.)

I hope no parents go through that dark period that we went through before treatment started.

amother

Smokey

Tue, Feb 13 2018, 4:49 pm

amother wrote:

I'm sorry for what you went through, but your posts have been very informative!

amother

Linen

Tue, Feb 13 2018, 7:15 pm

amother wrote:

No, no changes, he was always like this, staying on his curve. Always picky, but in a way specifically related to food textures, appearance and smell.

That's why I was curious if your dd had previously been a more typical eater and this was a change, or did she always have some pickiness?

Also, is arfid related to ocd?

Maybe its related to OCD but to be exact, it seems like a combination of sensory issues bad habits and a rigidity or fixation which is OCDlike.

You are asking if my dd had ever been a typical eater?

She always hated food smells but we knew she's sensory so it wasn't outstanding.

She loved to cook bake and eat! Yes she was picky with her food but don't we all have kids that would rather eat a peice of cake or a good sandwich rather than a peice of chicken? Or refuse to eat chicken altogether? Again nothing outstanding.

Later on I learned that ARFID sufferers enjoy a food for like 6 weeks or maximum 6 months and then on to the next food.

If this child likes a certain ice cream or pasta, then for the next few weeks this will be the child's go to food. So far so good. The child eats. No? But wait a minute...

To the parent, when this child suddenly complains that she's bored from said food, this makes perfectly sense!

Who would not become bored from eating the same food every. single. day?

But remember that thier food lists shrink? Once they get bored from a food it never makes it back on the list. Here's where the weight loss begins.

amother

Smokey

Wed, Feb 14 2018, 11:06 am

amother wrote:

Very interesting, thanks for this explanation. Based on this, I don't think ds has arfid because nothing really changes re preferences. Therapists have been saying it's OT-related because of texture, but no advice other than exposure therapy.

But this was good to learn about!

tryingto

Sat, Aug 18 2018, 10:29 pm

amother wrote:

ARFID a nutshell;

ARFID is a sensory eating disorder. Patients will eat only the foods that they are used to. The foods that they eat are always the same. It must have certain texture and taste and the same texture and taste every. single. time.

With time, the list of foods that they eat will shrink. Why? Because it is impossible that a dish should always be done the same exact way as last time. So if the child is used to a certain tuna sandwich, and let's say one day Gd forbid the bagel is overtoasted or there's too much tuna in it, then the child with ARFID won't eat it!

Also,
They cannot eat if there is noise.

They cannot eat if there's an intense smell of the food.

And, Because thier main motive for eating is to feel the taste and texture, Swallowing the food becomes a task. After a few bites, once they felt the taste and texture they don't feel motivated to continue eating.

With so many rules and regulations and so little food intake weight loss becomes inevitable.

The difference between ARFID and Anorexia in a nutshell;

☆ A person suffering from Anorexia is usually obsessed with her image and body shape.

Vs. The ARFID sufferer is not the least bit concerned with her image or body shape.

The thing she is concerned with is that she should have the right kind of food wherever she goes, the place shouldn't be too noisy, crowded or smell from food.

☆ To a person suffering from Anorexia, eating a fattening, fried or high calorie food will be a struggle.

Vs. The ARFID sufferer, as long as that ice cream is the right taste, the scrambled egg not too wet or too dry, the peice of meat not too spiced, over or underbaked, she will eat it regardless of how many calories it has.

The treatment in a nutshell;

If the child is still healthy enough to be at home then Treatment is the three phase family based treatment. Basically the Muadsley method but tweeked for ARFID.

To every session The parents will bring along a cooked meal for all of them including one food that the child refuses to eat.

The family will eat together while the therapist/specialist encourages the child to try the one new food and/or to finish the plate.

Treatment is then continued throughout the week at home by the parents.

In the begining the child makes no food decisions but as she eats more types of foods regularly, gains weight and regains vitality, she slowly starts making food decisions again.

Omg! This treatment sounds so easy on paper....

Is there an underlying reason for this extreme rigidity/pickiness/fixation/anxiety?

Of course there is!

Then why not treat thier underlying issue first?

Because right now, going to the root cause is pointless. Why?

I'll try to explain.
Let's say if a child were to be on a respirator because it has a pneumonia due to a neglected pulmonary issue.
Would anybody try to start healing the child by treating the pulmonary issue first? No!

The issue at hand is to heal the pneumonia, get the child off life support and then slowly start treating the pulmonary issue so the child doesn't run into crisis again.

With ARFID, because the child is so malnourished there is no way a brain can process regular therapy modalities in such a state.

The child first has to be saved physically with a medicine called "food" and only when the child is in a better place physically can the next phase of treatment begin.

Please remember that there's much more information and nuances to ARFID but I hope this explains it roughly.

I was just diagnosed with arfid and am extremely confused I didn't start any treatment yet. It looks like you know a lot about it you help me with more info?