Our visit with the pediatric psychiatrist went… somewhere, I guess. He listened to our concerns, TJ’s uneventful medical history, the episodes of choking, his fear of food and aversion to all things meat and vegetable. To sum up the hour long appointment, the doctor mentioned psychiatry-isms like anxiety, phobia and medication.
The suggestion to try medication came with much hesitation. Zoloft®, the preferred one of two options had the potential to reduce anxiety, yes, but also had the potential to induce a state of mania. Essentially we would make an almost seven year old child who is usually pretty happy, much happier. Although it would address the anxiety, there is no guarantee that he would suddenly want to devour a plate of chicken and peas.
The other unnamed drug for unspecified uses was suggested very reluctantly solely for the appetite increasing side effect. That doesn’t mean TJ would be hungry for previously untried foods, just very hungry in general. And very happy. Through chemistry, we could get TJ to eat a lot more pancakes and smile like a Cheshire cat.
There just doesn’t seem to be a medically tested approach to make TJ less stressed about eating.
I asked the doctor how hungry he would have to be to want to eat a giant worm. He said something about PTSD, keep doing what we’re doing and sent us on our way with a meant-to-be-comforting “you never know, maybe he’ll grow out of it”.
According to WebMD, “to be diagnosed with PTSD, you must have been in a situation in which you were afraid for your safety or your life, or you must have experienced something that made you feel fear, helplessness, or horror.” I would think having a raisin wedged in my airway would make be pretty horrifying. Certainly helpless. Definitely fear.
“The younger a child is at the time of the trauma, the more likely he or she is to develop PTSD.” TJ was three and a half for the raisin event. And then there was that rogue cracker when he was two. Lest we forget the pear episode at eight months.
“People who are exposed to the most intense trauma are the most likely to develop PTSD. The higher the degree of exposure to trauma, the more likely you are to develop PTSD. So, if something happens to you more than once or if something occurs to you over a very long period of time, the likelihood of developing PTSD is increased.” Would being expected to eat something you didn’t consider food three times a day for five years qualify?
Okay. I get it. My son is not only frightened of most foods, he’s been traumatized and all that “he’ll get hungry”, “hide it in the sauce”, “keep offering the same meal until he eats it” didn’t help matters much.
While the appointment was validating and the psychiatrist offered that the only autistic behaviour present is centered solely around food, we left the appointment, yet again, without the help we were hoping for.
A few days later, I was tidying up and came across a book I had purchased a few months ago, but never had the time to read. “Food Chaining: The Proven 6-Step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child’s Diet” This technique was suggested to me by a Speech Language Pathologist and I immediately ordered the book. I leafed through it quickly when it first arrived, but I couldn’t really absorb it. The sample chains in the appendix didn’t work for us. They were for kids who lived on mac n’ cheese, chicken nuggets and rice. How I wish! I put the book aside for more desperate times.
I find myself now, curled up on the sofa with my copy of “Food Chaining”, and reading it cover to cover. The four authors unite the knowledge of two Speech Language Pathologists, a Registered Dietitian and a Physician. One of the authors, Cheri Fraker, has a son that vomits on a fairly regular basis, a condition known as cyclical vomiting syndrome. Finding a physician that not only had heard of CVS, but was able to diagnose and manage it was a long and frustrating process. Her own experience as a mother taught her that there is always a valid reason why children refuse food and she created a technique that has been successful helping most kids in her practice overcome their food aversions.
When I reached the chapter about creating the food chains, however, I was just as disheartened as I was when the book first arrived. TJ has so far to go before his diet looks like one of the example chains in the book. On the FaceBook Food Chaining page, there was a post about chaining for the carb lover, where we have the opposite problem. We have already branched out to accept different varieties of crackers, bread and buns.
But what’s in the middle? How do I get from crackers, bread and rolls to mac n’ cheese, chicken nuggets and rice?
The FaceBook page has an e-mail address and I found myself clattering a desperate plea for advice out on my keyboard. There was a little more to it than this, but I’ll spare you my pitiful display of shameless begging.
“… My son is willingly exploring different textures of foods within his safe zone, but remains fearful of stretching beyond into really exotic things – like carrots.”
And, to my delight and surprise, there was a reply from Cheri Fraker a few minutes later in my Inbox. There was also much more to her response, including a suggestion to find a therapist to work with, preferably one who was familiar with Food Chaining.
“Vegetable is an acquired flavor / texture and many kids don’t eat those foods until they are older. We have the most success with spinach leaves, shredded lettuce with seasoned salt, dressing or other dips. Salsa is a great first vegetable. I love how you say he is exploring in his comfort zone, that is key.”
OK. So we are definitely on the right track. 🙂
The first step of food chaining is finding out what makes eating so scary. Is it allergies? Medical? Sensory? Behaviour? Armed with this knowledge, you build your feeding team, often an occupational therapist, a speech language pathologist, and/or a registered dietitian. These professionals should be experienced working with children, specifically children with feeding problems and the specific issue your child has. They should understand what Food Chaining is and what it is not.
Food Chaining is taking something accepted and slowly adding subtle variations on a theme. For example, if McDonald’s french fries are king and nothing else will do, the chain might look a little like this:
- french fries from other fast food restaurants
- home made shoe strings
- different shaped french fries (tater tots, faces, wedges)
- fried potato
- mashed potato
A food chain is not a linear thing. At any point you can branch off and start a new chain toward a new food. Different shaped french fries might lead to potato skins and the addition of different toppings – maybe even (gasp!) a meat or vegetable. The process has some serious potential!
Food chaining is not force feeding. The child leads, the team guides. If TJ makes a bold leap from home made fries to baked kale, my role is to encourage, support and get busy working on a whole new chain. If he doesn’t want to move past french fries, we focus on another chain, maybe the one that starts with pancakes or applesauce. There is never to be any pressure to eat anything. Since we stopped putting small bites of untried food on TJ’s plate and let him decide what he would like to try, if he wants to try anything, he has been more inquisitive about food than he ever has been. Food Chaining, what little I know about it, appears to be our Holy Grail!
Our feeding team consists of the OT that ruled out sensory issues and identified TJ’s “definitely different” sense of smell and taste. She is familiar with not only food chaining, but also the SOS steps to eating ladder. She also does not believe in pressuring TJ to eat anything he does not appear ready to try. I like her already.
In the meantime, I have some homework to do. I need to make a list of everything TJ eats, which shouldn’t take too long. Then, we will need a goal.
Lofty would be expecting TJ to have a list of liked foods that outnumbers his list of dislikes. And maybe I’ll win the lottery. Our sights are set on something more attainable. A well balanced and varied diet perhaps? One that doesn’t depend on filling in the gaps with disgusting tasting supplements. I think we can get there in time. I would be delighted if TJ could just accept that trying a new food won’t kill him. The worst case scenario of venturing into the edible unknown is discovering that he just doesn’t like it.
Or maybe, just maybe, he discovers that he does.