By Martina Candiago, Windsor, Ontario, Canada
When our child suffers with an eating disorder, this often comes attached with other co-morbid conditions, such as anxiety, depression, OCD, or some physical ones. This can get overwhelming because as caregivers we are already putting out one huge fire (the eating disorder) when more are emerging, and each one seems important to tend to. Sometimes, these co-morbid conditions can be quite distracting from our only goal – refeeding. The thing is, refeeding should remain a primary focus through them all.
My daughter is on the autism spectrum, she was diagnosed when she was 4 years old. She is bright, curious, resourceful, and socially challenged. She has some calming behaviours, and one of them is walking/jumping/running in circles (since the time she could walk). Not compatible with the refeeding process where each calorie is precious and when we are trying to keep the output minimal.
About 7 months into the diagnosis of anorexia nervosa, my daughter was diagnosed with Eosinophilic Esophagitis (EE). This one was a mouthful to adopt but what it means her body is reacting to some food allergen that causes the inflammation of her esophagus to the point of swelling where she would struggle to swallow food, and could require surgical expansion. Textbook catch-22. There are two options to harness this illness: go through a 6 food group elimination diet (lengthy process of eliminating 6 food groups and reintroducing one at a time after 2 months followed by upper gastroscopies to identify the food group that causes this allergy), or take oral steroids with another medicine, and eat everything. Her esophagus became seriously swollen and the value of eosinophils in her blood was extremely high so she had to be put on non-allergen drinks for 2 months in order to suppress the inflammation.
This was before I knew about the Around the Dinner Table forum so my only source of information was a hospital dietitian who knew my daughter while she was hospitalized with anorexia, and a gastroenterologist. The dietitian prescribed the special drinks and calculated the intake of 1900 calories (even though she knew her other diagnosis), which meant one drink every 1.5-2 hours. She was not allowed to have anything else. Two months later, two thousand dollars later (the drinks were expensive), my daughter’s esophagus stabilized but she lost some weight. Was this good? Was this failure? Which illness do I tackle first?
As for her calming behaviour, we had to find an alternative. Jumping was replaced by playing Nintendo, or digital drawing while seated. It wasn’t easy. Lots of reminders, timers, constant supervision. The other option was an extra snack for lost energy and that was a territory she didn’t want to go to.
EE really diverted my attention from anorexia. Even our excellent therapist was in doubt how to navigate this. Each specialist was treating the illness of their expertise without looking at all my daughter’s needs. In order to bypass the lengthy allergy searching protocol, I turned to naturopaths. We tried blood sample analysis which determined the dairy was the culprit. This was also confirmed by some energy healer (sigh). Desperate times, desperate measures, I know now. For two months I tried to eliminate all dairy but keeping up the calories, gaining weight albeit at much slower rate. The next endoscopy showed no improvement. I felt defeated and angry at the lost time. She was already taking 2 medications for her anxiety and depression which alone was a hard internal process to accept, now we had to add two more for EE. But, it also meant full menu, and that is when we started to see steady progress.
I am not proud of this detour towards recovery but if I can help someone by sharing my mistakes this post is worth writing. Nothing beats the power of food, a lot of food, and some help from pharmacy. I learned that addressing the eating disorder should have stayed on top of the pyramid of treatments while guiding my daughter through anxiety, supporting her through depression, getting creative with her autistic behaviour, and just taking the prescriptions for EE.
Good to know, thanks for sharing. My D16 AN, is very depress and is reducing the food intake everyday some less food in her plate. I push hard at one point and was told to back off some giving her options to eat what she wants, but certainly, she is holding intake mire and more everyday. I will push harder today becuase she us very weak and down.
My child with extreme OCD seesaws, ED to OCD with bouts of intense anger.
Must manage both but can’t let nutrition slide as it makes both worse.
A second hospital stretch in 15 months due to vitals and weight wasn’t that striking.
Battle the monsters.
I just listened to the intro for Day 5 in the First 30 Days FEAST series, and the emphasis is, Parents, you are not to blame. I would probably feel like you do about your winding path or detours, and I would love for someone to remind me that you are not to blame. You are not to blame. You did not make any mistakes because you really were doing the best you could with the information you had. You are the critical point where all the experts come together, and you succeeded in finding a way to help your precious daughter. A pat on the back to you, and a big, warm hug!
Thank you for sharing your experience. My son has multiple issues in addition to the ED, and it is reassuring to know that I am not the only one feeling the way you shared feeling. May we all find strength to match our challenges!