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

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My daughter (16) was diagnosed RAN in May 2019. She’s been refed 3 times as inpatient via NGT and spent 15 weeks in hospital this year (including stint in a mental health unit). As soon as she comes home everything goes wrong. She’s very depressed and self harms (cuts and scratches). She is incredibly resistant and this is compounded by ARFID (had since a toddler) and suspected ASD. We can’t get a formal ASD assessment until she maintains a healthy weight long enough. She is very smart and there’s no tricking her or hoping she won’t notice something.   

I have read, watched and listened to everything I can get my hands on. I really want FBT to work and I employ LSUYE. But it simply doesn’t work. She’s too depressed and has suicidal ideation. She’s on a cocktail of meds prescribed by a psychiatrist. I have almost exhausted all the services on offer in Western Australia. 

My anorexic daughter has an identical twin sister who’s healthy and living life to the fullest for a 16 year old.

I am feeling so powerless at the moment with every FBT tactic I employ or use of Eva Mausby words and strategies fail - I either get abused, she gets hysterical and is at risk of SH, or she shuts down completely. It’s the shutting down I find the hardest to deal with. Her life is pure misery.

I would love to hear from carers of teens with anorexia with underlying ARFID and ASD (and the depression and anxiety that goes with it). You may not be able to help me, but I just need to know there are others out there with kids suffering the terrible combo of AN / ARFID / ASD and could possibly let me know how you have or would deal with things. 

Welcome to the forum, sorry that you have had to find your way here. My  does not have ARFID, nor does she fit criteria for ASD. When ill however like many kids she also had many features of ASD. Anxiety and depression are incredibly common with eating disorders as is self harm. 

The degree of resistance you describe is not unheard of amongst those with AN with or without other diagnoses.  It strikes me that the most important part for your D's recovery is to maintain her nutritional status. The thing that would need to be managed in AN is the focus on body weight and fear of gain. Many parents of those with ARFID have found LSUYE  did not work as well for them. Honey_Badger managed to re-feed her son who had very specific needs. ATDT31_US also found that LSUYE did not work well for her. It may be worth looking at the ways they moved forward with re-feeding. 

My D was incredibly rigid in her foods when first ill. She was mostly re-fed on a very narrow diet which only broadened out several years latter. We also dealt with self harm and suicidal ideation. It was always a narrow line between insisting that she continue to eat, being prepared for further admissions, but also not pushing her anxiety so far that she followed through with her ever present suicide plans. 

You mention you are in Western Australia. I would imagine that you have limited options choosing service providers, so trying to get any team on board to work with you will also be important. How can we help you move forward?
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.
Hi, and welcome.  Sorry this is such a hard road.  Couple things that come to mind:
1.  ARFID has at least three subtypes: 1.  low volume/low interest in food -- no real reason to not et enough to gain, just does not seem to come naturally; 2.  Extreme Pickiness -- these are the kids who eat very limited variety of foods and perhaps must be one particular brand to be "okay."; 3.  Fear of Consequences -- these are the kids who, for example, at normally for years and then choked, or vomited, or similar and now food evokes a "fear of" whatever that unpleasantness was.  When you say your d is ARFID, since toddlerhood,  does it seem like one of these subtypes describes her?  I ask because the approach to feeding can be different depending on which subtype of ARFID.

2. I have twin 13 year olds.  Fraternal, not identical.    Both were failure to thrive as infants, but one outgrew the volume issue with food and gained like a normal kid beginning about 2 years of age or so.  Her sister has really never eaten normally. Twins are great.  Twins can be hard.  Twins with the issues you are describing sounds exhausting (and, of course, rewarding 🙂). 

3.  What does your ED twin currently eat with acceptance. The people on this board are experts at finding ways to calorically enhance all sorts of foods without detection.  We are stumpable, but if you give us the foods she does eat well, perhaps we can help you with ideas to make them richer and/or with some food chaining ideas.

4.  A bit out of left field ... but .... have you ever heard of PANDAS or PANS?  They are autoimmune issues that can present with some of the symptoms that can result in diagnoses like ASD, ARFID, RAN.  Some would say that it is not so uncommon. Some would say it can go years and years without detection because (a) it is a controversial diagnosis that not all doctors consider or even believe in; (b) its presentation can differ from kid to kid but there are some hallmark signs that should prompt a deeper review; (c) some would say that when a kid has alphabet soup but does not fully fit them, one should consider P/P.  A pretty quick screen might shed light on if you would be wasting time/energy to look further into P/P. Before getting into that, have you heard of it?  Have you ever thought your d fit it?  If P/P is part of the mix, it does not mean refeeding is not still necessary, but it might be approached differently and/or in conjunction with other treatments that can change the picture a lot, fast.  I don't want to waste your time on this, so post back if this is something you want more info on.  You could start with doing a youtube search of dr. Kapphahn and a talk she gave in 2019 -- I think it was the SANE conference in Sweden.  Dr. Kapphahn is an ED doctor at Stanford and has started to see that some of her ED patients are actually P/P patients ...

editing to add:  P/P kids often do not respond to ED treatment "as expected" ... now, lots of kids have a hard time with ED treatment and do not have P/P, but it is something to keep in mind unless P/P is truly a no-fit for your ; also, if P/P, certain psych meds are also unlikely to work as expected.  I am adding these things just because when I read your post they sprang out at me.
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.
Hi Sherashc,

Very sorry to hear of the awful time you are having with your d.

Actually there is research going on in various parts of the world about treating an patients who are comorbid with aspergers/ARFID and you may find it helpful if you concentrate more on nutrition but allow less variety in terms of food.  I understand children/young people with this type of ed benefit from having a different kind of FBT treatment to those with a straightforward an diagnosis (not that this is a straightforward illness in any case).  Would your d benefit from having food served on separate plates, for instance?  Does she prefer bland coloured foods?  Often these children are more sensitive to textures for example, is my understanding.  How did you manage to feed her before the an diagnosis?  

Also, if everything goes wrong when she comes home, there possibly needs to be more work done on the transition from hospital to home - and the staff need to ensure that she understands that you as her mum continue to be 'in charge' of what she eats, with the same agreements in place as in hospital.  Transitions from hospital to home are often very difficult to manage.  Are the staff in your local team at least giving her the message that not eating is not an option, and that weight gain HAS to take place?  It needs everyone on the same page and singing from the same hymn sheet that weight gain has to happen in order for the anorexic 'voice' to be silenced, so that the patient feels that he/she is being made to eat?  So often parents are told to 'refeed' but that is not FBT - with FBT clinicians are involved in ensuring that the patient is compliant around eating - maybe this is not actually happening.  

Please let us have more information and as FoodSupport says - how can we help you move forward?  Atdt31 gives very good analysis of the ARFID subtypes and maybe thinking how your d fits into this could help you with ways on how to better manage an incredibly challenging situation.
Believe you can and you're halfway there.
Theodore Roosevelt.

Thank you for the replies and tips so far. To answer some of the questions, my twins were born at 31 weeks and also were deemed failure to thrive. AN twin was diagnosed with what was then called “selective eating disorder” at aged 9. She now has a diagnosis of AFID. She has never been motivated by food and was rarely hungry. She has sensitivity issues (food smells, textures, etc.) and her range of acceptable foods is narrow and bland. There is no real trauma I can pinpoint as a start of the ARFID. She got her first period at 15 and things have declined since then. 

In January 2019 she decided to diet (without my knowledge) and as she doesn’t eat fruit and vege, she simply cut out all the foods she deemed fattening. I believe she started accessing pro ana websites to get diet tips and it spiralled from there. She got to a BMI of 13 and medically unstable by May 2019. The only time she has gained weight is by being NGT fed.  Her current BMI is 18.5 (down from 19.5 after being discharged from hospital 4 weeks ago).

Her current diet consists of the following (every single day)
200ml Fresubin
1 x small prepared chocolate pudding in single serve
2 x slices white bread and 1 slice of thin ham
1 x muesli bar (very particular on type and brand - will not deviate)
White rice and butter chicken OR white rice and teriyaki chicken (made with chicken mince)
Cookies and cream ice cream (only one type of brand)
only drinks water
has multi vitamins and calcium tablets. 

I make the evening hot meals for her and add Benecalorie, cream, butter, and oil (without her knowledge)

Since Xmas day she has dropped/refused a second Fresubin and 2 slices of buttered toast for breakfast. 

I have read about PANS and PANDAS and she doesn’t fit the profile. 

She is currently on 40mg of fluoxetine, mirtazapine, respiradol, and lorazepam. 
She is so incredibly resistant. But the worst behaviour to deal with is when she completely shuts down and refuses to move, talk, or even look at me. This can go on for hours. 

Yes shut down can be very hard to deal with.

Your D is on quite a mixture of medications, do you think any of them are helping? We used a significant number of medications too, but only a few really seemed to make a lot of difference. 

Is there a plan for follow up as regards her ongoing weight loss? When in hospital is she refusing all foods and hence NG feeding or is the NG feeding being used as a supplement. 
Some parents have managed to get to weight restoration entirely on supplements such as Ensure. Mamaroo (who is also in WA) used Ensure only for her daughter initially. Your D's diet clearly lacks variety, but the quantities are much more an issue than the types of food. How does it compare to her previous diet?

In dealing with her food refusals what sort of things have you tried? Some kids respond to prompts, pick up the fork/ drink etc. Some kids have been spoon fed or straw fed by their parents. Sitting it out can help, but in the long run it only works if they eat. Some parents have managed to have an option of going for supplements or NG feed at the hospital for missed or refused meals. 
Is it an option for your D to be discharged home with NG feeding?

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.
200ml Fresubin - can you go to a bigger bottle with more content? Here there are 300 ml and 400 ml available too. If you take off the label she may not recognise it.
If she asks if the bottle is different you can say "perhaps they changed the design?"

1 x small prepared chocolate pudding in single serve - can you change to home made pudding in a bowl? You could increase whats in and portion size slowly...

2 x slices white bread and 1 slice of thin ham - can you change to another brand with bigger slices or more calories per slice?

White rice and butter chicken OR white rice and teriyaki chicken (made with chicken mince) - rice sucks in canola oil/rapeseed oil very well if you leave it in the pot for a while and warm it up again...

Just some ideas...
Keep feeding. There is light at the end of the tunnel.
Just a thought based on my own research on Autism and the shut down behaviour you mentioned. My experience seems this is often due to a sensory overload and the shutdown is involuntary and almost a protective reflex to allow the brain to work through the issues. In our D case it has lasted up to 24 plus hours. Perhaps it may be useful to find out a little more about shutdown behaviour as obviously it’s just one part of a multi layered complex situation.

We found some incentives would help on re feeding journey. Most of our D calories came from shakes/hot choc. She found it easier to drink the calories. Would shakes or smoothies be an option?