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

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mtkmbc4
What if your child adamantly denies wanting to be thin, truly seems to be excited about making progress with weight recovery and has never verbalized or otherwise indicated dissatisfaction with her body? Yet, still she undereats if given the chance and is generally not happy when I choose her foods?

Some medical providers, including an adolescent medicine specialist in eating disorders, have said she does not have an eating disorder, yet I believe she clearly does. She has been given the ARFID diagnosis by both a child psychiatrist and a pediatric gastroenterologist.

Weight recovery is obviously still needed, but if the child isn’t aware of what drove her to undereat in the first place, how can that be addressed? I suppose we just refeed and hope it (whatever “it” is) just goes away with time?

We have an appointment very soon with a well respected (on this forum) eating disorders clinic.
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debra18
How old is your child? This is common in young children. My daughter who is now 12 also never had issues with weight. She was 11 when she became ill. I am refeeding her and she is doing well. Did she have any period of time when she was sick or something that could have created a shift that could trigger the disorder? My daughter still has difficulty with fullness. She eats most foods but would chose smaller amounts. That is why I need to be the one serving her and in charge of what she eats.
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mtkmbc4
She just turned 13 and she did have an illness as a 12 year old. The length of time she went without eating was prolonged abs out of proportion to what was expected with that illness. Even now,her resistance to having us guide her food choices at times has us on guard for restrictive AN.
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atdt31_US
I know I have read other posts of yours but I can't recall the situation very well.  You are saying "weight recovery" in this thread -- did your d actually lose weight or is her ARFID based on a failure to ever reach appropriate weights?  What was her high weight for age percentile and where is she now?  Same two questions as to bmi.
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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debra18
It is possible to have AN behaviors without problems with body image. I think it was changed in the DSM to be called restrictive eating intake disorder. The goal is the same. Eating and weight restoration.
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mtkmbc4
Historically her BMI was at 40%. (Didn’t weigh her between well child check up and when she became ill) 5’4”, low of 92 pounds and now 100 pounds. Her highest weight percentile was 50% (not counting early infancy) and height has been at 75%.

She was diagnosed ARFID losing weight and having eating difficulty. Treated with tube feeding and intravenous nutrition for many weeks but eating all by mouth for the last 2 months.
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deenl
Hi mtkmbc4,

My son never had a distorted body image, had no drive for thinness or for muscles, had no fat phobia. He just had a total inability to eat. It was like he developed a phobia for food but it was not related to fear of choking or vomiting. He just couldn't eat; a pressure inside him made him too afraid to eat.

The trigger for restrictive eating disorders of any sort is negative energy balance i.e. consuming fewer calories than you use. This negative energy can begin in many ways; a sponsored fast, new braces, illness, a diet, increased sport or growth without compensating increase in food or, as in our case, a difficult school situation which lead to reduced appetite. The negative energy flips a switch in the brain that sets the restriction on a tragectory that is very difficult to reverse. The 'cure' for us has been constant, day- in, day-out, 3 meals and 3 snacks leading to full nutritional rehabilitation and a good weight for height. For us, knowledge of the reason and therapy have not been necessary.

Here is a very informative article on negative energy.

Warm wishes,

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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mtkmbc4
Thank you, Deenl, for your post! We have some ideas as her parents what may have triggered the eating less and weight loss, but they are only guesses. I just read the negative energy balance article the other day and it really resonated with our situation. It seems that whatever was the initial trigger to eat less may never be fully known but I do agree that once the weight loss happened, the food restriction took on a life of its own.

Today is the ED visit! I hope we are able to get a few questions answered or at the very least feel supported as we help our d continue to gain weight.
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atdt31_US
Good luck in your visit today!!
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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mtkmbc4
The visit went well. We got some practical guidelines. D is about halfway back to her target weight, and she had really good gains the last two weeks. I wish I knew what the trigger was for all the weight loss, but I’m seeing great strides in her spontaneous choice of snacks without even needing a reminder. I am going more on rough calorie counts now rather than driving myself nuts trying to figure out every last calorie. Even so, I think we have a ways to go.
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