Eating Disorders in Younger Kids

We had a similar situation with our youngest but not nearly as severe. Turns out he had sensory processing issues and not just with food and was eventually diagnosed with high functioning autism as a teen. The sensory issues are real but your kid is too young to be able to express that to you coherently. How we dealt with it when he was young was by, luckily, finding a few things which did not trigger gagging or refusal and letting him control the situation. To give you an idea -I fed him breast milk at bedtime until kindergarten.It was not perfect and we got lots of lectures about making him eat what all the other kids ate but we just ignored them. When he got older we did have some episodes of collapse and hospitalization with extreme hypoglycemia and low BP which were very worrying but he eventually came to a realization that he could prevent this himself by controlling his food intake and eating what did not make him gag etc. Some of the things he would eat were bizarre compared to other kids-squid ink pasta and mussels, sashimi , lots of garlic etc. He also had issues with hypersensitivity to noise, tactile sensitivity (eg-velvet creeps him out) and social interaction with non compassionate individuals. In short-your child is a baby without the intellectual maturity to have insight in to his issues or even much control. All I can suggest is to try to de-escalate the stress factor and maybe see if you can find a few less usual foods he might be interested in. The texture of the food is a big issue also I think-at least it was for us. You must be exhausted with so many people involved and both kids having medical issues. Take heart-the sensitivity will probably improve with age, whatever the cause, and your child is not doing this to be "bad". Our child is now an adult pursuing a professional degree and a committed vegan activist so he has found his way in life. Believe your little on will also.

I’m writing this response as a message of hope and support!  Our child also struggled with not wishing to eat solids still at 18 mos, preferring to stay with breastfeeding.  We took him to occupational therapy at Kaiser, Dr. Caroline, who was wonderful and she worked with him for a year or more to overcome reluctance due to extreme tactile sensitivity.  He needed lots of support, but with lots of patience, he did fine, eventually accepting solid foods and also accepting tactile challenges.  She had him use a special flatter spoon and various other eating tools that really helped and then coached us to play various kinds of tactile and fine motor games with him to get him touching and grasping the world.  He was underweight according to the charts, but eventually he caught up.  We worked with him to experiment and find what texture foods were pleasing and stuck with those, frequently offering, but not forcing other foods.  We had one doctor who advocated force, but we declined, and found another provider, who allowed a gentle approach.  Later, we also alerted his preschool teacher to his tactile sensitivities and she worked with him to tolerate paint and sand.  Later, we enrolled him in a forest kindergarten that further helped him to work with and even enjoy mud and puddles.  The forest kindergarten also allowed him to play and be fully engaged in his storytelling, without demanding that he be engaged in something “real.”  Storytelling was a big part of his early childhood and we cultivated and supported his pace at allowing other narratives from the outside world to interfere with his play.

I would say hang in there, it gets better, and further that you know your child better than any doctor, so anything you can do to foster attachment, trust, and compassion will greatly help your child learn.  

I have no solid advice - I am just so very sorry that you’re dealing with this. My one thought was, since he eats a little in a different setting, could you try to feed him in a different setting? The car? A park? A different room? 

I have a 12 year-old with ARFID, so I have some familiarity with the condition. (He was diagnosed relatively recently but in hindsight has had it his whole life). A few things jumped out at me about your post...

You didn't mention whether you ever ruled out any kind of oral motor dysfunction. I'm assuming your child had appropriate testing done and that that is not an issue. But if you did not rule that out, I would make sure to do so.

It sounds like there is A LOT happening around food in your child's life (lots of therapists, big life change of entering preschool, major surgery - holy cow, that is a lot!) And one thing I've found with my child (and this was true for me as a child too) is that putting too much pressure around food/mealtimes can really, truly backfire. Have any of the therapists you are working with recommended the following? Allow your child at mealtimes to eat his fill of whatever his preferred food is. It doesn't matter whether it's junk food or not, or whether it fits your concept of "breakfast" or "dinner." If it has calories in it, and your child wants to eat it, let it be the meal. Then you set aside a time outside of mealtime to work on expanding what your child is willing to eat. But you remove the stress/pressure feelings from mealtime by allowing your child to eat preferred foods at mealtimes for as long as it takes for him to relax and feel safe and comfortable at mealtimes again. You prioritize your relationship with your child and your child's relationship to food/mealtimes and let those get better before you tackle trying to increase the variety of foods your child will eat. 

I found my way to this approach out of exhaustion and desperation. But it was later validated for me by the advice from a therapist at EDTLA (an eating disorder specialized therapy practice) as well as the book Helping Your Child with Extreme Picky Eating, which I found overall very helpful, even though it is not specifically meant for ARFID. It might be something to consider, but obviously will only work if there is some food out there that your child wants to eat (could be a drink too. For my son it was just milk for a long time.) The result is that at age 12, my child still eats a very limited variety of foods, but he does generally eat enough overall, so some of the panic and worry around malnutrition and failure to grow enough have abated. 

I wish you and your family the best with this. I know it is a difficult road. 

Our son had oral aversion about a dozen years ago when an infant (I don't think they used the term ARFID then, and I am not sure his condition was the same as your son's). He was premature, in hospital for a month before coming home. Some premies apparently don't want anything in their mouth when they are able to resist at 2 or 3 years. He also had a couple of surgeries for different things. He would not take ANYTHING by mouth, and we had to fit him with a feeding tube direct to his stomach. He was fed like that for several months at home, until we went to a feeding therapist in San Jose (we lived in Berkeley). He gave him all his meals (three or four a day, seven days a week) so you have to live close to wherever the therapist is. Over the course of six weeks or something like that (the full timeline escapes me as it was my spouse that handled this), our son overcame his fear of eating. After that he was fed very consciously home prepared meals by his grandmother for three months, who came to live with us for this. He fully recovered, had his feeding tube removed, and had not had any feeding issues since, and is now headed to college (a top 3 university). 

Good luck to you and your son.