Home

Anyone have experience with ARFID?
1, 2  Next
 
Post new topic   Reply to topic    Forum -> Children's Health

Report offensive ad

View latest: 24h 48h 72h


amother




Lemon


Post  Sun, Feb 11 2018, 8:54 am
Looking for resources and support.
Back to top

FranticFrummie









  


Post  Sun, Feb 11 2018, 9:40 am
I have it. It comes and goes with stress. How can I help you?
Back to top

happyone









  


Post  Sun, Feb 11 2018, 9:44 am
I always thought it's another word for picky eater, can sometimes turn into eating disorder such as anorexia .
Back to top

FranticFrummie









  


Post  Sun, Feb 11 2018, 9:56 am
happyone wrote:
I always thought it's another word for picky eater, can sometimes turn into eating disorder such as anorexia .


Not really "picky eater". Normally, I will eat a wide range of foods, if I'm feeling well. When I feel really stressed, I completely lose my appetite. That's normal, but what's not normal is that I actually enjoy feeling weak and hungry. Crazy, I know.

I'm absolutely repulsed at the idea of eating. Just thinking about cooking smells is enough to make me gag. When I have these episodes, all I can choke down is plain oatmeal. If I'm losing too much weight, I'll make myself eat vanilla ice cream.

Last year I lost almost 40 pounds without even trying. I lost two dress sizes. Part of me was delighted, and part of me was appalled. When friends see me, the first thing they ask is "OMG, are you OK? You're so THIN!"

I'm in therapy to handle my stress triggers, and it's working wonders. I also meet up with a friend once a week who cooks amazing food for me. I bring the wine, and she does all the work. We have a great meal, and I'm relaxed, and I enjoy it. That helps keep my calorie count up. Cooking for Shabbos helps too, so I'm getting at least 2 healthy meals a week now.
Back to top

amother




Lemon


Post  Sun, Feb 11 2018, 12:06 pm
I PMed you, FF. Thanks for your response
Back to top

amother




Emerald


Post  Mon, Feb 12 2018, 3:23 pm
ARFID is not a bottom line diagnosis, though drs will make it sound like one. It basically describes the behavior you're seeing, without saying anything about the cause. Severely restrictive eating will always have a biological cause. Leaky gut will cause restrictive eating because the person will restrict their intake to foods that give them an opioid reaction, most notably dairy and gluten (lots of arfid kids restrict to pizza, mac n cheese), it can be ocd (fear of choking, fear of contamination, need for control), it can be related to sensory, taste and texture issues which relate right back to leaky gut, it can be due autonomic dysfunction where the body is not regulating appetite normally. Allergies and intolerances can cause this, especially if there is pain. Deficiency in b vitamins, and especially b1 can be a cause, as thiamine (b1) is essential for regulating appetite. Zinc deficiency can also cause things to taste and fee weird in the mouth, so that can be another cause. Emotional factors can play a role too, if there is trust issues or trauma surrounding food. OP you will need to get to the root of why your child is restricting their eating. Don't be fooled by the ARFID diagnosis.
Back to top

amother




Linen


Post  Mon, Feb 12 2018, 3:30 pm
amother wrote:
Looking for resources and support.


Do you have It? Or a child of yours?
Back to top

amother




Linen


Post  Mon, Feb 12 2018, 3:32 pm
FranticFrummie wrote:
I have it. It comes and goes with stress. How can I help you?


Afaik grown adults aren't diagnosed with ARFID. You might have the symptoms but you will be diagnosed and treated differently.
Back to top

amother




Linen


Post  Mon, Feb 12 2018, 3:34 pm
amother wrote:
ARFID is not a bottom line diagnosis, though drs will make it sound like one. It basically describes the behavior you're seeing, without saying anything about the cause. Severely restrictive eating will always have a biological cause. Leaky gut will cause restrictive eating because the person will restrict their intake to foods that give them an opioid reaction, most notably dairy and gluten (lots of arfid kids restrict to pizza, mac n cheese), it can be ocd (fear of choking, fear of contamination, need for control), it can be related to sensory, taste and texture issues which relate right back to leaky gut, it can be due autonomic dysfunction where the body is not regulating appetite normally. Allergies and intolerances can cause this, especially if there is pain. Deficiency in b vitamins, and especially b1 can be a cause, as thiamine (b1) is essential for regulating appetite. Zinc deficiency can also cause things to taste and fee weird in the mouth, so that can be another cause. Emotional factors can play a role too, if there is trust issues or trauma surrounding food. OP you will need to get to the root of why your child is restricting their eating. Don't be fooled by the ARFID diagnosis.


Have you had a child diagnosed by a psychiatrist with ARFID and were told that b deficiency can cause It?

If it were only that easy.
Back to top

amother




Emerald


Post  Mon, Feb 12 2018, 4:01 pm
amother wrote:
Have you had a child diagnosed by a psychiatrist with ARFID and were told that b deficiency can cause It?

If it were only that easy.
Unfortunately, psychiatrists are only trained to treat symptoms. They are not taught to look for the cause of the symptoms. I have a child that could have qualified for multiple psychiatric diagnoses had I not searched for a cause.

thiamine deficiency and anorexia
https://www.ncbi.nlm.nih.gov/pubmed/24607345
Back to top

amother




Linen


Post  Mon, Feb 12 2018, 5:32 pm
amother wrote:
Unfortunately, psychiatrists are only trained to treat symptoms. They are not taught to look for the cause of the symptoms. I have a child that could have qualified for multiple psychiatric diagnoses had I not searched for a cause.

thiamine deficiency and anorexia
https://www.ncbi.nlm.nih.gov/pubmed/24607345


Scratching Head
Psychiatrists are for diagnosis. Treatment for ARFID is not done by psychiatrists.

I'm relieved to hear that your child only 'could have' qualified and even then, not for ARFID.

Thankfully, you did not go through ARFID with a child but please don't throw comments before you know what's flying.

Proper ARFID treatment is anything but what you describe. And being that you put it in one box with Anorexia proves that you have no clue.
Back to top

FranticFrummie









  


Post  Mon, Feb 12 2018, 5:45 pm
amother wrote:
it can be due autonomic dysfunction where the body is not regulating appetite normally.


This is an excellent point. I should mention that I also have M.E. that presents with bouts of gastropariesis. The gastro flares up with stress, but the M.E. is why I have gastro in the first place. All of this ends up acting like ARFID. Whether it is or not, is anyone's guess. None of my doctors can agree.

I still think a psyciatrist would be helpful, because the brain/gut connection is very strong. A leaky gut can cause depression, and depression can make your guts feel horrible.

There are no easy answers, it's extremely complicated. I think that there are too many "waste basket diagnoses" in medicine. Basically, they're not sure what causes it, they're not sure how to treat it, and they're not even sure if it's curable, but no one will admit to not knowing anything. Not only that, but insurance doesn't want to pay for extensive diagnostic tests, so your chances of getting a proper diagnosis are slim to none.

So, they give you a label, send you home, and tell you "get some rest." Mad

/rant
Back to top

FranticFrummie









  


Post  Mon, Feb 12 2018, 5:47 pm
amother wrote:

Proper ARFID treatment is anything but what you describe.


Could you explain more about what ARFID treatment is supposed to look like? There's not much info out there, and it would be greatly appreciated if you could give us an overview.
Back to top

amother




Linen


Post  Mon, Feb 12 2018, 11:00 pm
FranticFrummie wrote:
Could you explain more about what ARFID treatment is supposed to look like? There's not much info out there, and it would be greatly appreciated if you could give us an overview.


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.
Back to top

amother




Lemon


Post  Tue, Feb 13 2018, 1:01 am
Thank you another linen. That was very helpful.
Back to top

amother




Lemon


Post  Tue, Feb 13 2018, 1:23 am
Another linen, do you treat eating disorders proffesionaly? Can I ask what your experience is?

To answer your question in a previous post, no, it is not my child, but someone very close to me, and I am actively involved in their care.

Thank you again for your helpful information.
Back to top

amother




Linen


Post  Tue, Feb 13 2018, 8:51 am
amother wrote:
Another linen, do you treat eating disorders proffesionaly? Can I ask what your experience is?

To answer your question in a previous post, no, it is not my child, but someone very close to me, and I am actively involved in their care.

Thank you again for your helpful information.


Thanks.
I'm the op of this thread.
http://www.imamother.com/forum.....p?t=318869
Back to top

amother




Smokey


Post  Tue, Feb 13 2018, 9:59 am
Linen, I'm new to this thread but found this very interesting, thank you.

If I may ask, when did you first notice the signs in your dd? Did she eat normally her whole life and this was a sudden new change? Or was it a progression?

Asking because I have a 9 year old ds who sounds like what you describe, although not as extreme. And he's not under-nourished; the opposite actually because he mainly eats carbs and processed foods.

It was funny to me that you gave a tuna sandwich as an example. If I would make *myself* a tuna sandwich he would probably run from the room because the smell and sight of tuna disgust him.

Other odd (to me) things that disgust him: cucumbers, grease visible on pizza, scrambled eggs, a piece of chicken that is not completely uniform in color (ex. it's bluish closer to the bone), challah crusts, any cheese that is not both melted and currently hot, and many more.

He was like this his whole life, doesn't seem to be getting better or worse.

I never heard of Arfid until now, I always thought of his food issues as something on the OCD spectrum.

It's bothered me because he's closing himself off to properly eating and enjoying food, and of course it's not healthy.

So now I'm wondering if I should look into the arfid treatments...
Back to top

FranticFrummie









  


Post  Tue, Feb 13 2018, 11:08 am
amother wrote:
Thanks.
I'm the op of this thread.
http://www.imamother.com/forum.....p?t=318869


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.
Back to top

amother




Linen


Post  Tue, Feb 13 2018, 4:24 pm
amother wrote:
Linen, I'm new to this thread but found this very interesting, thank you.

If I may ask, when did you first notice the signs in your dd? Did she eat normally her whole life and this was a sudden new change? Or was it a progression?

Asking because I have a 9 year old ds who sounds like what you describe, although not as extreme. And he's not under-nourished; the opposite actually because he mainly eats carbs and processed foods.

It was funny to me that you gave a tuna sandwich as an example. If I would make *myself* a tuna sandwich he would probably run from the room because the smell and sight of tuna disgust him.

Other odd (to me) things that disgust him: cucumbers, grease visible on pizza, scrambled eggs, a piece of chicken that is not completely uniform in color (ex. it's bluish closer to the bone), challah crusts, any cheese that is not both melted and currently hot, and many more.

He was like this his whole life, doesn't seem to be getting better or worse.

I never heard of Arfid until now, I always thought of his food issues as something on the OCD spectrum.

It's bothered me because he's closing himself off to properly eating and enjoying food, and of course it's not healthy.

So now I'm wondering if I should look into the arfid treatments...


Is he losing or not gaining weight?
Back to top
1, 2  Next Recent Topics

Page 1 of 2 View latest: 24h 48h 72h


Post new topic   Reply to topic    Forum -> Children's Health

Similar Topics Replies Last Post
Anyone with photoshop experience?
by yummydd
2 Thu, Oct 08 2009, 2:13 pm View last post
Dr Fennoy, experience anyone?
by amother
4 Mon, Feb 01 2016, 3:38 pm View last post
anyone have experience with gnucash?
by ruth
0 Thu, Mar 24 2011, 9:00 pm View last post
by ruth
Anyone have experience with scoliosis?
by hadasa
42 Thu, Dec 26 2013, 2:07 pm View last post
Anyone have experience with phobia
by amother
2 Thu, Dec 24 2015, 9:53 pm View last post

Jump to:  




Report offensive ad