F.E.A.S.T's Around The Dinner Table forum

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nbjames
Hello All

I find myself coming to this website daily over the past year and half, it certainly helps.  Thank you all

Background.  17 year old D.  Diagnosed about 1 year ago with ARFID, hospitalized for 15 days (1 yr ago) with HR 43, dropping to 39.  stopped eating 4 months before admission.  Had stomach pain with food consumption x 2 years prior to admission, (worked up with sick kids GI for over 2 years to find a reason for her abd pain - all came back normal) started associating food with pain prior to admission and stopped eating, before this abd pain she was eating normally.   Lost periods for 3 months, got them back 1 month after admission.   fast forward 1 year. Almost weight restored (about 10 - 12 lbs below target weight)

I guess my main concern and looking for anyone who has a child with ARFID if they have experienced this....

Our D was hospitalized in the leading ED hospital for children, they dx her with ARFID, it made perfect sense to me and my H as she was literally afraid of the thing that keeps us alive was the thing that was hurting her.  When she was discharged in outpatient setting they (out patient ED clinic, different hospital) immediately (after 1 visit) changed her ED from ARFID to AN restrictive.  Since then no one has even spoken of ARFID.

It took about the first 3 months out of hospital for her to stop shaking and crying at each meal.  You could literally see the terror in her eyes as she looked at her food, her hand shaking as she brought the fork to her mouth, it broke my heart.  She would eat then curl into a ball and cry because of the pain.  She has never once identified foods she is afraid of (for weight gain) except for meals that are large as they will hurt her for about 3 hours after eating.  My D is in pain from when she has breakfast to about 11 pm every day.  She has never once expressed body image issues.  Never checked her wrist/arms for gain, never asked what I am feeding her and said 'that's too much' or 'I can't eat that".  She does not purge or exercise in her room ( I am constantly checking this).  She has eaten everything that is placed in front of her, eaten all foods and I have tried to find something she is afraid of and I can put pasta, chips, chocolate you name it and she eats it. She has complied with the no exercise rule, even though she was highly active before this dx.

But.. the out pt ED clinic keeps pushing her to talk about her ED voice.  They keep discounting ARIFD and asking about ED.  I keep saying she has no body image issues she is afraid of food.  They do not listen.  They cannot explain why she is not gaining weight fast.  I am with her 24/7.  I make everything she eats and I am with her for everything.  She is at about 4500 c per day and maybe gets .5 lbs per week.  Since discharge form hospital she has gained about 20 lbs in 1 year.  she goes up and down 1 - 2 pounds each weigh in but I cannot add weight to her fast.

She has not grown height wise in over 3 years so I know she is not in a growth spirt.  I guess I am at a loss., her metabolism is haywire.  I know ARFID is a relatively new dx but it is still a dx and different form AN restrictive.  Now I know one ED can morph into another BUT ...ARFID is a real Dx and I have watched for any sign that my D may have AN R but I can see nothing. 

How can I get the outpatient to stop pushing the AN R and listen to us with the ARFID? and provide her with the help she needs re the fear of food.  They keep telling us we know our daughter the best (Maudsley family based therapy) and yes, we do.  We/I know her the best.  I am with her 24/7 but no one listens.

I spoke with the out pt Ed program today. they want to put her (and us) in an intensive day program (again because they cannot explain her lack of weight gain), I was told the ED are a deadly disease and could I imagine how I would feel if i didn't take advantage of a program offered to me and something bad would happen to my daughter... needless to say I am still crying 7 hours after this conversation.

Help... Support... something...

Cheers



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ValentinaGermania
To be honest, as long as your d is underweight and not gaining weight and afraid of food it is really not important how you call that ED.
It is important that she gains and gets better. Nothing else.

So first question must be: why does she not gain?
Normally there are 3 common reasons:
1) secret exercising
2) secret purging/vomitting
3) not enough food

Can you exclude 110% Nr, 1 and 2? Then we can help you brainstorming ideas how to up her intake if you want.

"But.. the out pt ED clinic keeps pushing her to talk about her ED voice.  They keep discounting ARIFD and asking about ED.  I keep saying she has no body image issues she is afraid of food.  They do not listen.  They cannot explain why she is not gaining weight fast.  I am with her 24/7.  I make everything she eats and I am with her for everything.  She is at about 4500 c per day and maybe gets .5 lbs per week."

It is not rare that ED patients even with RAN have NO body image issues. Here are a lot of parents that kids did not have that at all.
4500 calories is about average but she might need more for constant gaining. Some need about 6000 and more.
Is her intake at least 30% fats? That is important.
Please check very well that she is not exercising or purging. I know a lot of parents that would have sworn that their kids did not do that and they found out it was happening a few days later...
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
This is definitely a long haul. 
You mention in your other posts that your D has had all other medical conditions excluded as a cause for her restrictive eating initially and her weight gain. As mentioned by Tina the possibilities are not enough input or excess output of calories - out put includes exercise, and purging, input includes the amount you are feeding but there are also possibilities of things like malabsorption. If all else can be excluded then the only other option is increasing intake - despite the distress this is associated with. Does she better with liquid calories - if there is gastric status she may do better with higher calorie liquids?

A number of families on here have had kids with no overt fear of weight gain or body image issues. It was often factored about other things. 
Unfortunately nutritionally she will need the food no matter what. The concept of exposure therapy is learning that the feared thing is not as bad as it was thought. It seems like your D is still really struggling does she need a second opinion re any other causes of her pain - all whilst continuing to gain?

As for the ED voice? My D has never been asked about this - and she had straight up restrictive AN. She was asked how she was feeling, where she saw her future, what she wanted to work towards, how to manage her fears. It sounds like most of these things would also apply to your D. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Torie
It is such a terrible time when what they need to do (eat more) is the very thing that traumatizes them most.  Ugh.  One thing that helped me keep going was being reminded that the more calories we got in each day, the sooner we would both be through this.

All our kids feel terrible after eating, but it sounds like your d is at the high end of this.  Some have found that a hot water bottle on the belly can give a little relief, and distraction can be a help, too.  Weighted blankets are popular here.  However terrible she feels, you need to help her push through because the only way for her to get through this is to eat eat eat and then eat more.

Young kids most often relate to the concept of an ED voice.  My d was a mid-teen, and she did not.  She was annoyed when someone asked her about it, and actually I think she wondered about the stability of those asking her.  I think they all experience something that might be called "head noise," but that is not necessarily experienced as "an ED voice."  In general, older sufferers (teens and up) experience it all as originating within their own mind instead of as an intrusive "other."  At least, that is my understanding.

There are some good posts on here about distress tolerance.  Your d is going through he1l and, and she needs to keep going.  You need to stand her distress.  The calmer and more confident you can appear in the face of her misery, the more strength she can take from you.  We don't say you need to BE confident - we only ask that you try to APPEAR confident.  Fake it until you make it.  Keep telling her that things WILL get better.

And please remember that we are with you in spirit.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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deenl
Dear nbjames,

nbjames wrote:
It took about the first 3 months out of hospital for her to stop shaking and crying at each meal.  You could literally see the terror in her eyes as she looked at her food, her hand shaking as she brought the fork to her mouth, it broke my heart.  She would eat then curl into a ball and cry because of the pain.  She has never once identified foods she is afraid of (for weight gain) except for meals that are large as they will hurt her for about 3 hours after eating.  My D is in pain from when she has breakfast to about 11 pm every day.  She has never once expressed body image issues.  Never checked her wrist/arms for gain, never asked what I am feeding her and said 'that's too much' or 'I can't eat that".  She does not purge or exercise in her room ( I am constantly checking this).  She has eaten everything that is placed in front of her, eaten all foods and I have tried to find something she is afraid of and I can put pasta, chips, chocolate you name it and she eats it. She has complied with the no exercise rule, even though she was highly active before this dx.

But.. the out pt ED clinic keeps pushing her to talk about her ED voice.  They keep discounting ARIFD and asking about ED.  I keep saying she has no body image issues she is afraid of food.  They do not listen.  They cannot explain why she is not gaining weight fast.  I am with her 24/7.  I make everything she eats and I am with her for everything.  She is at about 4500 c per day and maybe gets .5 lbs per week.  Since discharge form hospital she has gained about 20 lbs in 1 year.  she goes up and down 1 - 2 pounds each weigh in but I cannot add weight to her fast.. 


My son was very, very similar to this. He was diagnosed before the DSM5 so his official diagnosis is EDNOS (ED not otherwise specified). He simply seemed to develop an phobia for food. Nothin else. He never had body dysmorphia, no drive for thinness or muscles (common in males), no specific fear of fats, no body checking, no exercise compulsion until very, very low in weight and it disappeared quickly, no purging, no ED voice. BUT he could not eat food without absolute terror. The only way we have been able to overcome that and return to normal life is to have 3 meals / 3 snacks, supervised by parents, day in, day out for years. It took probably about a year before he could reliably eat every single meal with the anxiety getting lower and lower each time.

Unfortunately, no matter what the cause of the eating difficulties, we need to find a way for our children to eat sufficient amounts for health. Many of the symptoms our children experience are purely the effects of malnourishment as seen during the Minnesota Semi-Starvation Study. Reading about this really helped me to understand how important food is. It really is medicine that delivers all the micronutrients we need for the brain functions to work. Remember, that emotions and thoughts are supported by biological processes that require building blocks that come from food. 

From what I understand, medical reasons for your daughter's digestive pain and distress have been, by and large, eliminated. It is very common for our children to experience pain. The main causes are the physical consequences of re-starting an under-used digestive system and the effects of stress and anxiety on the digestive system. I wonder if one/both of these might be playing a role in your case. You can see the chicken and egg situation that develops for our poor kids. The quote (mis)attributed to Winston Churchill "When going through hell, keep going" is applicable here. The only way to end this viscious circle our kids are in is to help them eat the necessary amounts, day in, day out for months or years. This, at the very least, prevents the medical consequences of both short term and long term malnutrition and gives them the best chance of a full recovery, physically, psychologically and emotionally.

When my son was eating but not gaining weight, I am afraid to say that it was one of two things - insufficient calories or loopholes where he was not digesting the full amount. Each human being has an individual metabolism and, while not the norm, there are families here who have had to feed their kids 6,000 to 8,000 calories in order to see recovery. The severe anxiety, actually more like terror, that our kids feel around food causes our normally truthful kids to try to avoid eating in any way possible. Even though we were supervising our son, he still managed to sneak food into his clothes and throw it away. For a number of months, we had to frisk him to close that loophole. Interestingly, he was grumpy but accepted it. I think he was secretly glad that he could no longer deceive us as I forgot a few times and he would hold out his arms and snarl 'I suppose you have to search me now' almost as if he wanted to remind me!

The FEAST website has a page with resources for ARFID, including links to favourite threads here on the forum. Sometimes the treatment resembles that for AN but other times it is different. Although our diagnosis was officially EDNOS, the solution for us was to follow the RAN protocols. I would suggest that the name applied is of less importance than that the treatment is achieving it's aims.

Wishing you strength and courage,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Enn
nbjames wrote:

Our D was hospitalized in the leading ED hospital for children, they dx her with ARFID, it made perfect sense to me and my H as she was literally afraid of the thing that keeps us alive was the thing that was hurting her.  When she was discharged in outpatient setting they (out patient ED clinic, different hospital) immediately (after 1 visit) changed her ED from ARFID to AN restrictive.  Since then no one has even spoken of ARFID.


Have you been asking them directly what made the DX change?That does seem to upset you a bit, I think. 

nbjames wrote:


It took about the first 3 months out of hospital for her to stop shaking and crying at each meal.  You could literally see the terror in her eyes as she looked at her food, her hand shaking as she brought the fork to her mouth, it broke my heart.  She would eat then curl into a ball and cry because of the pain.  She has never once identified foods she is afraid of (for weight gain) except for meals that are large as they will hurt her for about 3 hours after eating.  My D is in pain from when she has breakfast to about 11 pm every day.  She has never once expressed body image issues.  Never checked her wrist/arms for gain, never asked what I am feeding her and said 'that's too much' or 'I can't eat that".  She does not purge or exercise in her room ( I am constantly checking this).  She has eaten everything that is placed in front of her, eaten all foods and I have tried to find something she is afraid of and I can put pasta, chips, chocolate you name it and she eats it. She has complied with the no exercise rule, even though she was highly active before this dx.



The exposure therapy of food and distraction and distress tolerance on yours and your d's part may be helpful. You had mentioned before that you were looking into meds for pain and all physical/medical issues had been ruled out by GI. A hot water bottle and distractions may help her keep her head away from thinking about pain. Also with the muscles of the gut not being used properly for some time, the sensation they feel may not necessarily be pain but the closest word she can come up with. Using muscles you have not used for a long time will feel uncomfortable, or she is associating the pain with food and has the "psychological" pain. Either way keep feeding.

Re: ED voices, my d did not have any that she admitted to. Also they don't need to dwell on that issue, but work to get the weight up. Some kids need over 6000 cal per day. Keep increasing and see how it goes. How long have you been at 4500 cal per day? We had to go up every week. Has she gained at all on 4500 cal? 

As for the intensive day program, if it is offered, why not try and see how it goes. Those programs are hard to come by in a timely fashion. If it does not go well, you may always pull her out. You have done well by your child, no one can say otherwise. I am sorry you felt chastised by the team. I would have a one on one discussion in person with them again, if you are up to it and discuss all your concerns in detail.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Scaredmom2019
This sounds a lot like my D. I guess I look at it like ARFID or RAN - both have fears of consequences due to food intake. Pain,  weight gain, sick, etc... all end up restricting. The ED voice could be " don't eat that because you'll get fat" or "don't eat that because you'll feel sick ". Either way, they struggle with the ED voice.

We also did all the GI studies due to "stomach pain" etc. All came back negative. The fear of food making her feel sick and have stomach pain started when she was probably 10. She is now 17. 

I guess an ED is an ED is an ED. They all stink! I also struggled with the RAN label as I still think ARFID is more appropriate in our case but at the end of the day we just know.our child doesn't want to eat, finds it stressful and painful. 
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debra18
Sounds very frustrating to not be understood by your team. This sounds similar to my daughter too. She did have fear foods but at this point only struggles with quantity. I suggest calorie dense foods that pack in the most calories in the smallest amount. What has saved my daughter is a milkshake every day with heavy cream and ice cream. You can add also chocolate or peanut butter. Juice or milk at every meal will add more calories too. 
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