Making Chains

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.

Disney Cheshire Cat

Disney 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”.

PTSD

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.

Sigh.

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.

Like now.

food chaining

Look what I’m reading!

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.

Advertisements

6 responses to “Making Chains

  1. My son is 15 and was born with significant GERD but the pediatrician did not order a barium swallow for him until he was 9 weeks old. (I did spend those 9 weeks going back and forth to the pediatrician explaining my son’s problems eating/not eating & screaming.) By then the damage had been done, his esophagus had been burned raw. So step one was to heal the throat and then coax him to eat. Everybody told me he would grow out of it. Maybe the GERD, but not a fear of eating.

    We have been to many doctors and tried many things and still no expansion of his diet. I have always described my son’s mouth as being super sensitive, very similar to children on the Autism spectrum. So, 2 weeks ago I googled autism spectrum disorders and eating and the Food Chaining book popped up. Like, Carrie, I read the book immediately and was thrilled! I found a name for his issue SED. He eats less than 20 foods, replused by texture, taste, smell and hates to get messy, will not eat if the food is not familiar, rejects entire food groups, and we have lost foods.

    So, I made an appointment with his pediatrician this Wed. 10/5/16 to get a food team together. I have printed out the article “Picky Eating vs. Selective Eating Disorder” and “Getting Past Picky Advice for Teens and Adults.” Hopefully he will have knowledge of SED and/or can send me in the right direction.

    When he was 3 we did speech therapy for his eating but it was a disaster. After reading Food Chaining I realized the Speech Pathologist jumped way too fast from French Fries to Chicken nuggets.

    I have started Food Chaining and my son is interested and on board. We decided to focus on breakfast and snacks. For example, everyday for breakfast he eats a bowl of cereal and 4 pieces of bacon (yes, bacon, only meat he will eat!). But I could see the cereal starting to “disappear”. So bring on the Food Chain!

    I went to the store and got every possible thing I could think of that he liked for breakfast and then “chained” some of them . My cart was full of junk! I was appalled because I have always tried to feed him – healthy foods and steered away from sugary items etc. For example, Sam told me he would eat strawberry pop-tarts. So, I got those, but also blueberry, raspberry and cherry. He told me he probably wouldn’t like the cherry, but would TRY them!

    I did the same thing with chips. Got him chips he likes and a few “new” kinds. Chips are safe and he is willing to try a different one! Now, I certainly did not get anything radical that would scare him. But now he is open to trying a new chip as long as the safe ones stay in the lunch rotation.

    I did the same thing with protein bars, granola bars, and trail mix/peanuts.

    We first tried some new foods together and talked about them. One trail mix we tried, he told me it tasted like it was burnt from being in a fire, as if the house had been on fire, not burnt in an oven. What a description! He also told me that a type of white powdered donuts tasted like playdough and cardboard!

    When he got the hang of tasting and talking, I began to put new foods in his lunch (all snacks, granola bars and yogurt) as well as his safe favorites. And we started rating them on a scale of 1-10, just like the book said. And he would tell me why – for example, croissants too chewy. Now we are talking about new foods! Openly and happily.

    So we are headed in the right direction. My next step is to have him try foods again that he did not particularly like. The Food Chaining book recommended trying things several times before crossing it off.

    Of course I looked at the Food Chain examples in the back of the book and thought, no way! But, one step at a time. In the mean time I hope his pediatrician can guide me to some professionals that are more knowledgeable than me.

    I also got a weekly day planner and write down everything he eats and how he rates them. I also have a notebook with all the foods we are trying. I categorize it breakfast, trail mix, granola bars, crackers, chips, smoothies, juice.

    I was so happy to find other moms who had older children with this issue! I hope we can learn a lot from each other and help our children through this struggle!

    • I’m so glad you are finding answers. It’s so frustrating to not know how to help. I do hope your pediatrician can help. It’s tough to find one that really understands. I think too many of them think it’s a behavior problem and want to work on a reward and punishment system which just doesn’t work. The psychiatrist for my son suggested that he couldn’t have any screen time until he tried a new food. A new food everyday! We hadn’t been able to try a new food in years, let alone every day. On the way home, my son, very matter of factly said, “since I’ll never be able to use the computer again, can you help me learn some crafts?” Before we even got home he had decided he wasn’t capable of receiving the reward. I have to admit, I haven’t done a very good job of working on new foods lately. It’s just easier to give him the same thing over and over. His lunch consists of goldfish crackers, bag of chips, saltine crackers, and pretzels, every single day. Your post has renewed a desire to try introducing new foods again. I’d love to hear how your pediatricians appointment goes.

    • I cannot believe the psychiatrist said that about not screen time! And it is no surprise to your son’s response. If anything your son’s response shows just how real the problem is.

      Have you tried getting different goldfish crackers and trying them with him. Just one and then talk about it. This seemed to help Sam because he knew he was not expected to eat a whole bunch of crackers, nor would they show up in his lunch.

      If you do get a “greenish” light on a new goldfish cracker, put a few in his lunch with his favorite goldfish.

      Start small, very small. And celebrate every tiny success.

      When Sam was little I always read to him while he ate to distract him. One day I had cut up 1, yes 1, strawberry and put it in a vitamin cup. Well, didn’t he eat the whole thing! I remember being SO excited and then the realization hit me that he ate 1 strawberry.

      How do his sisters and brothers react, you mentioned you have 5 children?
      ~ Katy

  2. I just came across your blog two days ago and can’t stop reading. I almost burst into tears when I saw the title PTSD. My son is close to your sons age. He’s 10 now, almost 11. We’ve been dealing with this since he was probably 3 (at least that’s when I started to worry that it was more than picky eating). Like you, I’ve tried everything. I found your blog because I had just gotten home from the doctors office after meeting with the behavioral psychologist. I was so frustrated at his behavioral approach to our problem, I came home and frantically searched the internet for something else. I had already found out about ARFID (which I asked the doctor if he was familiar with and he said yes, but clearly didn’t know enough to help). So I started with that, came across Ellyn Satter, and something lead me to this blog. The reason the PTSD got me is because at the end of last year we decided to try neurofeedback as an approach to my sons eating. I strongly believe in it as it helped some family members with depression and anxiety. I thought, why not? I’ve tried everything else. Although I still believe it works for some people, after 30 session, we were not seeing any changes and it was getting very expensive. So we quit and I started over trying to find solutions. But during our time there, they informed me that my sons brain map very closely resembled the brain of a women who had been through an intensely traumatic experience. So much so, the technician hearing the story struggled to listen. I was shocked. We are a very loving family with few major problems. Nothing even close to traumatic. We decided that day after day, 3 times a day, his exposure to “scary” foods must have been almost like being abused. So to read this is just another validation for me. I have actually been practicing a similar approach as Ellyn Satter suggests, I just didn’t know it. But unfortunately, although I was doing what felt right, I didn’t know if it was right based the overwhelming opinions stacked against it. Like I’m too lenient, I’m an enabler, etc. Reading your blog is a weight lifted and is allowing me to continue to do what feels right without wondering if I’m really screwing him up. 🙂 As a side note, I immediately cancelled the follow up doctors appointment and feel very confident moving forward. Thank you for sharing your story. It’s inspired me to start my own blog. Since I only found you 2 days ago, I really only have one post, but it’s a start. Check it out if your interested! http://www.livingwitharfid.blogspot.com

    Thank you!!!!!

  3. Definitely going to checkout this book. My son is a big gagger the minute most foods hit his mouth, often resulting in him throwing up. Looking for some advice… When you remove the pressure about them taking small bites, what do they eat for mealtimes then? Do you make them what they want? My son would live off cherrios if I let him. We’re so torn about where to go and whether we want to continue reinforcing the one bite rule. :/ Thanks for any advice you’re willing to share!!

    • Gagging is often a symptom of pressure – the expectation of the food is unpleasant, the disgust response kicks in, and that one bite becomes a self-fulfilling prophecy… all over the floor.
      What do they eat for mealtimes? Bread, fries, rice, pasta, pancakes, pizza… Not all of those may be on your son’s list – many aren’t “safe foods” at our house – anything “starchy” will do. The first goal is finding enough to eat. Nutrition and variety come later.
      Feeding is a relationship built on trust. More on how to start and nurture that relationship here – http://www.ellynsatter.com

      If you have more questions, get in touch through the Contact page. 🙂

Comments are closed.