This statement is weighs like a tonne of truth. Anyone around me knows how long and hard we have fought to figure her out. Her weight and growth has always been a concern to me. It took 10 years to figure out why.
She was born 6 pounds 5 ounces, at 12 days overdue. She was a peanut. The early days were of normal adjusting. We had some issues with her not taking enough breastmilk at first causing her to lose weight. A trip to the lactation consultant and breastfeeding was a new and easier routine. She nursed often, but for short periods of time. I often worried she wasn’t getting hind milk. Alas no one else seemed too worried, as she skated on the very low end of the growth charts. We nursed until she was 18 months.
We tried to get her on the bottle and formula supplementation. Maybe breastmilk wasn’t enough? Maybe she would do better on formula. We tried more than once. Her poor father tried. One such attempt he was just to get her to take a bottle with breastmilk. We had a plan, and talked about possible ways for success. I left our property and went for a nice country walk. The loop around our hamlet was serene. With nicely groomed, tree lined properties, and nice quiet nature around us. It probably took 20-30 minutes. And as I got nearer to our home it was clear things were not going well. I could hear her screaming from a few acres away. As any parent knows, you can’t take this type of screaming for long. I entered the home, and retrieved her from her father’s arms. He was utterly exasperated and felt defeated. She was dripping wet of sweat from all the screaming. I nursed her back to calm, and her dad retreated in defeat. We were all a little defeated. We tried a few more times, but she was having nothing to do with the bottle now.
When we introduced solids, she seemed concerned with things no other toddler would even consider. She wouldn’t eat the rice cereal if it was the wrong temperature. Or consistency. And I mean it had to be PERFECT. If some cereal fell on the floor or tray she wanted it cleaned up before the next bite was taken. She wouldn’t eat grapes if they were cut. Only whole grapes. And as parents know you don’t feed small children whole grapes for fear of choking hazard. There was more but you get the picture. I learned quickly she was a picky eater. I read books, talked to anyone that would listen. And did as much research as one could, given I was raising a toddler.
It was a challenge raising a difficult temperament, but on the other hand she was a joy. Her personality was bigger than her tiny frame, and larger than the average one year old. On such occasions as our regular grocery shopping we would collect the grocery cart and start in the fruit and veggies section of the grocery store and work our way across the store. She was one years old and still less than 20 pounds. She would be difficult to keep in the cart so I would allow her to walk around. I’m not exactly sure who started the trend, her or I, but eventually she was INSISTENT that she would be the one to push the grocery cart. Yes, my teeny weeny one year old and with all her might would push the full grocery cart. Watching my tiny girl magically mastering the overloaded grocery cart was awe inspiring. When she was tired she would sit on the bottom tray of the cart and joyfully collect what we needed to put in the cart.
She was a smart babe! Mastering baby sign language, walking and talking at an early age. But what mother doesn’t worry about her babe not eating and growing. Her size weighed heavily on me.
By the time I became a single mother, she was 3 almost 4 years old, and she had a younger sister 18 months old. Her sister was a grandiose 9 pounds 4 ounces at birth. Easy to feed, and easier in temperament, generally a happy baby. This seemed to accentuate the lack of growth and weight in my older daughter. As my younger daughter grew and the two would play together, I would declare ‘get off your sister’ to the younger of the two as a protest that she was so much heavier and stronger than her older sister. ‘Don’t break your sister!’.
As she grew older the issues became more specific and concerning. When school started, several new problems presented themselves. The most disheartening was her focused concern for food labels. In grade 1 health class they teach the kids about healthy food choices and how to read the food labels for nutrition information. THIS was frustrating. SHE WAS 6 years old and concerned with the amount of fat in her food?! She would ask what food choices were healthy and what foods were ‘better’ than the other. Pitting one food against the other. I still express frustration over the schools teaching this lesson too early in the curriculum and without the regard for the damage it can do to young minds. But I digress.
She would also have trouble settling into the first 6 weeks of school. She would all but stop eating at school and at home. It got so bad in grade 2, I called my sister in tears and had her come take her niece for the night in the middle of the school week. She lived the town over and we met for the hand over. As I handed her my ‘big’ girl I pleaded that she try to get some food into her. And told the school she would not be returning to the rest of the week.
She was about 7 years old when I had enough. As we were getting ready for bed one night I looked at her tiny pajamas hanging on her tiny frame, and could see nearly every rib. Her waist dipped in between her rib cage and hips and I could clearly see her hip bones. SHE WAS 7! No mother should know the curve of the bones on their child. I sat on the floor in the hallway, staring into the bathroom as she brushed her teeth. And started to silently cry. At 7 years old, she was under 40 pounds. Still in a five-point harness car seat usually meant for toddlers. And my efforts were clearly not enough on their own. By now I had already asked for a Paediatrician referral for other reasons and I put in the call to see him about her weight and growth.
This visit did not turn out the way I wanted. We ended up on a regimen of return visits every 3 months for weight and height. There were several more teary episodes over the years. And other Doctor referrals with another year of observations. It would be nearly 3 more years before we got the help and answers we needed.
In the end, she was diagnosed with an eating disorder in March 2015 at barely 10 years old. Avoidant Restrictive Food Intake Disorder – ARFID. It was added to the Diagnostic Statistical Manual for mental disorders 5 (2013); a tool used to diagnosis and categorize psychiatric disorders. She had a disorder before her disorder even had a name. It’s no wonder it was so difficult to get help. And why my cries and pleas went unheard or misunderstood. She did get help. We got help. After the initial diagnosis, we travelled once a week to a children’s hospital eating disorder clinic an hour away. There we would receive talk therapy and behaviour modification training at the eating disorders outpatient clinic. It was a life saver for both of us.
We are currently in recovery after 23 months treatment. I say this lightly because it was only been the last few weeks we have declared it in recovery. There is still no protocol for treatment of ARFID. And most people and clinicians have no idea what it is. Most people still believe picky eating is no big deal. Just lay down the law and don’t waiver; ARFID is not picky eating and a lot trickier than a firm hand at parenting. It requires a lot more finesse in treatment.
Our story has a lot more details than this short story. I have glossed over many details, and missed some pivotal moments that played into our progress to diagnosis. The main message is follow your gut. I told my story to many people. Doctors, well-meaning strangers, friends, family, and in the end, no one knew what we were dealing with better than I did. And I didn’t let go of that nagging feeling that it could be fixed with the right tools.
If you are concerned or have questions, please message me. There is no judgement. Only understanding.