"Life is like a box of chocolates. You never know what you're gonna get." ~Forrest Gump
When you first arrive in the NICU (or any hospital experience, really), you are immediately thrown into an alphabet soup that is very difficult to decipher. A's and B's, IVH's with varying degrees. C-PAP, NG, O2. CC's and ML's. Numbers and letters that make your head spin.
Beyond the NICU, you are innundated with adjusted vs. actual age. Developmental delays. Quarantine. Therapies of every kind from speech to feeding to physical.
By age 3, you think you are coasting. You graduate from most therapies (if you are lucky) and your kid's age is just their age. You are in the clear.
But are you really? Are you really ever in the clear? Even if your child is term. This isn't even a pre-term thing, although there is a link between this disorder and prematurity.
Avoidance/Restrictive Food Intake Disorder (ARFID) and Generalized Anxiety Disorder (GAD)
We've noticed since starting kindergarten that lunches were not being finished. Some came home with almost all of the food that was sent. She would tell us she didn't have time to finish it all. Or that she didn't like it, even though she was regularly given a choice as to what she would like.
By First Grade, and her ADHD diagnosis, we felt she was probably too distracted by her friends to eat.
By Second Grade, more and more lunches were sent home essentially untouched, and she started refusing dinner as well. We'd make what she requested and then refused to eat it. When we pushed, she said she was afraid of getting fat. Which, for a 45 lb 8 year old, is hard to imagine. On her follow up for the initial trial of ADHD medication, she had lost 1.5 lbs. And she has consistently fallen off her curve. First, we thought she's just putting on height. Then the next year she still grew...but started dropping percentages. This year, she did not put on much weight or height. With her several statements (and they really were very few...but they were alarming hearing this from an 8 year old) our pediatrician sent us to the Eating Disorder Clinic.
So, what is ARFID?
According to the Center for Eating Disorders at Sheppard Pratt,
ARFID is defined as: "Individuals who meet the criteria for ARFID have developed some type of
problem with eating (or for very young children, a problem with
feeding). As a result of the eating problem, the person isn’t able to
take in adequate calories or nutrition through their diet. There are
many types of eating problems that might warrant an ARFID diagnosis –
difficulty digesting certain foods, avoiding certain colors or textures
of food, eating only very small portions, having no appetite, or being
afraid to eat after a frightening episode of choking or vomiting."
In our case, things really spiraled downward after she got the stomach flu back in February of 2017. She spent months regularly crying she was afraid she was going to throw up. Every night she would panic if she didn't have a bucket by her bed because she was so scared she was going to vomit. This lasted for 6 months or so before we finally were able to sneak the bucket out of her room and she stopped asking for it. In December of 2017, she had a minor version of the stomach bug, immediately prior to being assessed by the clinic. During that assessment, she showed signs of malnourishment and although it wasn't severe, we started Family Based Therapy (FBT.) FBT works with families to develop strategies and skills to increase a child's ability to eat enough to maintain nutrition and growth.
Come February of this year, she came down with a bad tummy bug and spent hours vomiting even water. And she started skipping multiple meals and snacks a day and lost over 3 lbs. And hospitalization to get her weight restored was a serious possibility. She refuses almost everything, even old standby favorites and it really is a battle to get her to eat even a few bites of her food. She's thrown food away and lied and told teachers and us she's eaten it.
Her body has difficulty recovering from any sort of illness. She just doesn't have enough resources available to maintain nutrition and healing.
Enough of chocolates with different kinds of filling. I'm throwing the box out, I've had enough curve balls.
Things you need to know:
1. We did NOT cause this. This is biological and has a variety of triggers that causes it to come to the surface. We expect our children to eat a variety of food and well balanced meals and diets. We gave them choice in what they ate. Each school lunch is packed with input from them. We ate at the table, together as a family. We did everything we could to ensure proper nutrition. But we ultimately can not hold her down and force the food down her throat. This will be a long process which seems like it will require that we insist she eats what WE put in front of her. No negotiation. No ifs, ands and butts. No choice. Our job is to put healthy meals in front of her. Her job is to EAT them. So if you eat with us, know this. She might scream, fight, cry but for the love of everything do NOT for one second suggest that she ate "enough" and to just let her go. Or bribe her with ice cream or give her attention. We are not torturing her (although she may act like we are.) Chances are you won't see this behavior as she puts on a good front in public.
2. This will be a lifelong battle. We are working with her team to help her develop the resources to manage this as she grows as the fear to eat will always be there.
3. This CAN kill her. If she can't manage her fear of vomiting (part of the GAD) then she will starve herself to death.
So here we are again. In another club no one wants to join. This is the 3rd club we've been thrown into. Infertility, prematurity, and now eating disorders.
It's hard to be hopeful at this point. We are only a few months into this very long journey. There is no light at the end of the tunnel right now. We are staring into the black abyss wondering if we will emerge from this intact. We always seem to overcome, but right now we are tired. And preparing ourselves for the war.
Because war it is. And a warrior is what she is.
