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

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This is my first post and I am praying that someone will be able to offer me some help as I feel like I can't do this anymore.

The position I find myself in is that my son (18) is a highly restrictive eater (not just the normal fussy eater). it started over 4 years ago when he slowly started to stop eating various foods and then food groups. He currently will only eat certain proteins (soya chunks, boiled chicken breasts, tuna and ham), vegetables, porridge (with water) and bran flakes (again eaten with water). Everything has to be boiled or put dry into the oven. In addition, he also eats a vast amount of protein powder which he mixes with coffee and artificial sweeteners. 

He has one period of eating a day (about 7 pm till 11 pm) and will the same thing for about 3 weeks and then change. Recently we have seen 5 litres of porridge per night, then 2 broccoli heads, 4 leeks, a tin of tomatoes and either ham or 5 boiled chicken breasts with lots of spices added or 2 cauliflowers ground into cauliflower rice, with 6 Spanish onions and 5 turnips. He also eats a vast amount of salt and soya sauce. 

He hasn't grown since he was 14, going from the 95% height percentile to the 44%, his waist/hips are so thin that he is still wearing the clothes I bought when he was 13, his hands are yellow (looks like he is in liver failure) and his BMI is currently 17.1, it has been as low as 14.8. 

I don't seem to be able to get any help anywhere as his eating disorder is different from anorexia due to the fact that weight loss, body image is not driving force behind his restrictions. My son thinks that if he eats one molecule of fat, he will die of a heart attack one mouthful of sugar will give him diabetes etc, and so he is of the opinion his protein/vegetable diet is the most super healthy diet there could be.  However, this means when I do get to see someone medically, we are dismissed as he 'doesn't have the mindset of an anorexic'. 

His GP has been useless, telling us to live with his yellow hands and to give him a break. However, following my insistence that she referred him on to see an Endocrinologist, she finally contacted someone, told him he had no problem but she would carry out a further blood test for completion which showed he has a testosterone level of 6. As she didn't even ask to see him regarding the results, just said to stop taking any protein powders and she'd retest his blood in 3 months, we took him to see a private doctor who said he was seriously underweight, and that his dietary restrictions and exercise regime had resulted in him being in a secondary hypogonadal state. However, as soon as the doctor suggested that he helped him to address his diet and gain weight before he referred him on to an Endocrinologist as this is what they would ask him to do first, he refused to go back. The doctor also tried to get him to see a psychologist which went down like a lead balloon. My son's only response was to buy testosterone on the internet and self inject - another cause for worry.

While he might not have the mindset of someone with anorexia, everything else is exactly the same as it would be if he were anorexic. It's affected his behaviour, health (e.g. he wears a thermal vest, long-sleeved teeshirt, two hoodies, his dressing gown and his thick outdoor coat indoors because he is so cold), his school grades have suffered due to the effect of a 'zero fat' diet and he is becoming socially isolated. We have to watch every comment as we are constantly walking on eggshells around him because of his anger. 

We also think that he is probably now messing around with drugs, which will not be helping his mental status at all.

If anyone can offer any suggestions at all, I will be eternally grateful as I am currently watching him getting thinner and thinner and really don't know where to turn or what to do to help him.

Thank you.
Dear Skippy, sounds like you are on the ball even as the world is failing you and your family. I'm betting on YOU prevailing. There are a lot of strategies and resources for ARFID, but they are harder to find. We have a resource page on our site that may point to some things you may not have seen yet (and as you find others please let us know so we can add them to our current resource page! https://www.feast-ed.org/arfid-avoidant-restrictive-food-intake-disorder/
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director

Hi -- sorry you are up against this, especially right now when the whole world suddenly seems to be on edge and stressed with coronavirus.  

Couple things:

1.  As you know, EDs can present in very individualized ways ... but still, there are some patterns that are expected.  You say this started when he was 14 ... prior to 14 did he eat completely normally (all food groups, textures, temperatures); prior to 14 did he grow normally (steady growth curve?  what was top bmi (raw and percentage) prior to 14 and was it sustained).  If he really did eat and grow like normal before 14 and then suddenly started this eating regimen ..... I would wonder if there is something else ALSO at play .... you can search PANS and/or PANDAS on this forum for some posts that could introduce you to this idea ...  some of what you have written is suggestive of strong OCD type behavior, which is a red flag for PANS/PANDAS, but of course OCD also often is seen in "regular" EDs and even just on its own.  Know that OCD does not have to be as obvious as washing one's hands until they bleed (bad example in the age of COVID-19, but you know what I mean).

2. I am unfamiliar with ARFID (especially the picky eater style of ARFID) starting at such a late age... that does not mean it cannot happen, but generally I think of the picky version as being from a very very young age, if not birth.  The ARFID that deals more with "fear of consequences" is known to start at any age and often follows a trauma ... so, normal eater/grower chokes on a piece of meat and now will only eat smooth food type of thing.  So if this picky thing started at 14 and there was no trauma to inform his choices, I wonder if ARFID is the right diagnosis.  It may not matter what it is called ... you already know he needs to gain weight; he needs to broaden his menu choices; he needs to be willing to eat at more regular times and spread his intake out over the course of a day.  What does he verbalize about why he is eating this food in this manner (not that he is necessarily going to be correct, but might be instructive to hear his take on it).  I wonder why the protein powder ... if he is thinking it is to optimize health, perhaps a visit to a men's health provider would be useful ... they have them here now as a niche business ... real doctors, do real labs and some not mainstream, focus on testosterone and hormones and helping men optimize their health. If you found one of these niche doctors and PREPPED him/her on the situation and you got comfortable they were understanding what you need, maybe they could do the labs and see your son and, coming at it as a MAN's doctor, who often help with body building type stuff, .... if that doctor explained how his protein powder and day-time restrictive eating, etc, were actually causing him to not be strong maybe he would follow their nutrition advice (AGAIN .. you MUST meet with them first to be sure they are on a good track in this regard).

3.  Sounds like your doctors are not being very creative in their approach and are not recognizing the seriousness of this, and perhaps missing actual diagnoses that flow from the poor eating or maybe even that play into the poor eating.  

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.
Hello and sending love

My daughter (17) was also dx with ARFID last year.

In the beginning of treatment watching her struggle with terror in her eyes as huge tears rolled down her face as  she lifted a spoon to her mouth to eat was heartbreaking.

Advise - this is what has helped us

#1 - get him into therapy. right away  He needs help to work on the fear.  We got our daughter into therapy right away and the therapist had her start with baby steps to confront the fear.  For example she had to go to the fridge on her own and get a shot glass add milk to it and drink it (all on her own).   Now I am sure for some this may seem silly but she was terrified of all food so this was a big step for her.  It has taken about a year, she is still afraid but able to eat 'normally' and is near target weight.

#2 - FBT is what we had to do.  Get your GP to give you a referral to an eating disorder program and hopefully they are well versed with ARFID.  Since this is a new category of eating disorders many do not fully understand and lump ARFID kids in with AR- restrictive.  They are similar but also different. 

#3 Vitamins - Since she was highly restrictive before she was hospitalized she was deficient with nutrients and her cognitive function was impaired.  She takes multi vitamin, Omega 3-6-9, vit D, vit C, and Iron tab.

#4 With FBT she has no choice in foods ( 3 meals - 3 snacks per day) I made everything and she has to eat it. But she was never in the room when I made food (something she learned when she was hospitalized).  What this allowed me to do was be creative with adding calories.  Avocado oil is my friend, odorless, tasteless, and is able to be worked in with most foods.  Any way you can 'play' with what you serve and add to his food?  Can you make the smoothies for him?
 As she didn't even ask to see him regarding the results, just said to stop taking any protein powders and she'd retest his blood in 3 months, we took him to see a private doctor who said he was seriously underweight, and that his dietary restrictions and exercise regime had resulted in him being in a secondary hypogonadal state. However, as soon as the doctor suggested that he helped him to address his diet and gain weight before he referred him on to an Endocrinologist as this is what they would ask him to do first, he refused to go back. The doctor also tried to get him to see a psychologist which went down like a lead balloon. My son's only response was to buy testosterone on the internet and self inject - another cause for worry.

I am so sorry to hear how ill your son has been for so long and how little help you have had with trying to get help. Having read this, and given no one has actually given you a diagnosis, even though you have been trying so hard, this sounds very much like anorexia to me. His denial of ill health and fear of weight gain - refusing to engage when recommended - suggests this is well and truly there. We are not doctors and cannot diagnose, however this is what untreated anorexia can look like. 

These are very difficult times in the world which makes it even more difficult. The biggest advantage you have is that your son is home with you, and his ability to go out and about right now is severely restricted. Trying to find new support when he is not critically ill right now may be tough however you can still do a lot to help move your son towards health. Read widely - When your teen has an eating disorder is great https://smile.amazon.com/When-Your-Teen-Eating-Disorder-ebook/dp/B07B91Q551/ref=smi_www_rco2_go_smi_1405964225?_encoding=UTF8&ie=UTF8&qid=&sr=  another place you can read for more information is the FEAST family guides  which includes some starting information for refeeding. I would also look at this brochure which comes from Australia to help you get started before you can find support. 

None of this will be easy, and I would suggest that you will find your son's resistance to having treatment will increase the more you push for treatment. That unfortunately is the nature of this illness and in no way says you should stop. Getting started with very small incremental changes, starting regular meals, starting very small amounts of fats in his diet initially then increasing. 
Trying to rationalise with your son when he is so ill is likely to be very unhelpful. His belief that he will have a heart attack if he eats fat is enough to tell you that his thoughts are not rational. They will however be driving his behaviour and make sense to him. 
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 @skippy,

I, too wish you didn't need us but you have come to the right place. Your situation resonates with many of us.

For a start, your son's reasons for restricting don't have to do with body image. My daughter's anorexia started when she decided on "healthy". Many other kids had a mere growth spurt which resulted in onset of anorexia, through no "decision" as such.

That said, you can now launch into FBT. Parents taking over control of the child's eating and exercise. You'd think - as I did - that a teenager is due some independence. A normal teenager: maybe. A teenager with an eating disorder: this is actually a child whose brain has been taken over by food thoughts and fear. Reacts like a toddler, needs safety of parental control as a toddler.

I now believe no teenager should be in charge of preparing meals. It gets too overwhelming. I know it was different when I was growing up, with allocated kitchen chores, though it was help only, I never had to make big menu decisions.

So, after a horrendous year 2018, we are gradually seeing improvement. It is a slow slog. She is still into all things protein, especially protein powders. I take your son's suspected liver damage as a stark warning. Restriction tries to pop up here and there, but she knows better than to interfere with meal preparation, with Mum's Kitchen Rules (hence my moniker).

You are so right to not give in to the restriction! You want to get your child back to safety.

Wishing you lots of strength as you tackle this. We are here to help you along!
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.