What follows are the tips and books and practical things that made life easier for us.
At the beginning, I remember knowing something was very wrong, but not knowing what name to give it. I knew we were free falling into crisis and needed help now. Our GP was not helpful. I have yet to forgive him for his patronizing response and inability to recognize a very sick child. He delayed our time to treatment by a week, at a time when she was decompensating fast. Looking back, I should have taken her to Emergency for admission, but, you see, I am an emergency RN and I was not ready to parade my desperately ill child through my work place. Instead, I sought an urgent referral to a Pediatrician with admission. Thankfully, she did not have a sudden cardiac arrest during the time of the delay. I don’t think I could have forgiven myself if that had happened.So, tips for this beginning phase:
This is the main resource site in BC. I’m not sure about resources in other places.www.keltyeatingdisorders.ca
start with a GP appointment and ask for a referral to whatever local resource you have been able to find.
If you thinks something’s not right, there is likely something not right.
- GP’s are often ill prepared for managing eating disorders, so you should go with the facts and observations you have seen, and resources you want to be referred to. You will likely need to be assertive. Don’t leave without a full assessment of vital signs, an ECG, Weight, and height to calculate BMI and postural Vital signs (laying and standing) you should also have blood work checking CBC, electrolytes and phosphate levels.
If an admission to hospital is needed, here’s some practical tips for supporting the parent of the sick child.
- Bring them several single portion meals that can be easily reheated and a selection of snacks that are low calorie (for the parent). Most units have a fridge and microwave for parents to store and prepare their meals.
Feeding myself 6x a day was difficult. Your friend will have to eat with their child during all meals and snacks. I liked apple sauce or a cheese stick for snacks because they were light. Their child will likely be forced to scarf back snacks of 400+ calories on top of meals, sometimes equaling over 4000 calories a day! The food needs to be calorie dense, otherwise the volume would be more than anyone could eat.
They will have to learn to shop for food differently than they ever have before. Instead of looking for 'low fat' 'low calorie' foods, they will have to search out the opposite. It feels weird to look at your cart and see so many calorie dense foods. It takes time to sort out which food will give the biggest bang for the volume. We still only buy full fat food. I learned that fat is actually neuro protective! So, our buying habits have changed. I found recipes that were calorie dense on website intended for kids with Cystic Fibrosis and other health issues that cause high metabolism rates.
- NEVER make a comment about how unhealthy the diet appears. At the beginning, the goal is just to get as many calories into the child as possible. The quality of the calories is less important. ALL food groups are represented. Carbs and Dairy are incredibly important. Sometimes, a snack is a milkshake made with Hagen Daas icecream, whipping cream instead of milk, and maybe some honey for good measure. As the child stabilizes, and their weight has increased, the snack sizes decrease in calories, and the diet starts to look more normal. Frosted 2 bite brownies were a frequent snack for us. So were giant muffins with butter.
It can actually take a long time for the metabolism rate of a person who has been in a state of starvation to correct itself. They may need to continue to eat way more calories than an average person just to prevent weight loss! It took almost 2 years for my daughter to feel hungry and have normal appetite cues again. As she started to say "i'm hungry" or ask for an extra snack, we started to regulate her calories less. Every time, we did an internal happy dance at this evidence of her healing. She continued to grow, as soon as she was nourished again, but lacked the appetite most kids have as they grow. We had to regulate all that in the background. Her snack sizes increased or decreased as we monitored her BMI as she got taller. Gradually, she was able to portion her food independently and now she eats like a normal kid.
- Consider gifting a good book that’s quick to engross you in the story but also easy to put down. I read “The Art of Racing in the Rain” and it was so nice to have a mental break once in a while. I recently read “Around the World in 80 Dates” that is a similar type of book. Easy but entertaining. There were many times that I appreciated the brief escape from reality.
- We did a lot of colouring, and a lot of puzzles. Games are not great because the brains of the girls are not very focused. Connect the dots for adults was fun too. Many girls take up crochet or knitting. Trivia stuff was popular as well.
Their child will be on strict activity restrictions and will have to sit still for an hour after every meal and snack. That’s 6 hrs a day of doing nothing but trying to keep their minds off the food they just ate. They literally are not allowed to stand, or wiggle their legs, or anything that uses calories.
- Just listen to the venting and validate her feelings. Your friend is probably bouncing between anger and despair and anxiety. It’s a dark dark time. I was angry at the beginning. That’s okay to feel. What I needed to hear was it was okay to focus the anger on the disorder, but not on my daughter. It’s so easy to say “ just eat!” But it’s so much more than that for them.
- Purely feeding them and nourishing their brain is enough to settle many behaviours. Some of the darkness and anxiety and anger they’ve dealt with is purely the brain starving. It improves as they start to regain weight. This page on the Kelty website give more details. Just encourage your friend to trust that time and food will improve many things.
- The phrase “don’t believe everything you think” was helpful for my daughter. The verse about thinking on things that are true and good and right was also good (Philippians 4:7-9) . Affirmation that she is a child of God. that she is loved, that she is precious, that God is especially fond of her. Also that she has value, that she deserves to be here, that you are happy and blessed to know her, that she is worthy of being in this world. The opposite of all these things is what the disorder is telling her.
- Tell your friend that recovery IS possible. Tell them that God does heal, and that they can pray for complete healing and believe it will happen. In reality, complete healing is rare, but not unheard of. I prayed for complete eradication of disease and complete healing of my daughters mind. We were blessed and are so thankful Gods answer was in line with our requests.
- Randomly send your friend messages saying “you are strong, even though you feel weak. You can do this. Take it one meal at a time” “I’m thinking of you and I’m here if you need to vent” “I admire you for working so hard to show your child love, even when they're hard to love right now” a good “Fuck Eating disorders!” Was a well received message for me!
- Your friend will be basically living at the hospital with their child and visits are often stressful. Never visit over meals or snacks. At least not until they’ve gotten into a bit of a groove and had some successes, and its been planned ahead of time. 9-10 am, 1-2pm and 6-7pm we’re pretty safe times for us. Also after 9pm. Those would be good times to drop off food or send a text that needs an answer or just stop by to give your friend a hug and a coffee. 0800, 1000, 1200, 1400, 1700, 1900 are the meal and snack times.
It’s like preparing to enter a battle just before those times. You’re mentally running through your scripted responses to the arguments you’re expecting and you’re evaluating the food to anticipate what will be ‘easy’ and what will be ‘hard’ to complete. You’re praying for strength and patience and fortitude and peace. The vibe of the hospital ward changes. You can sense the tension.
- Most specialty units that focus on eating disorders have a very strict 'no camera' policy. This includes cell phones. So, if your friend does not respond for hours, it may be because their phone is not accessible.
- I really was helped by reading the book “Eating With Your Anorexic”. Its a mothers memoir of battling the disease in her own home. It really shaped how I viewed what my daughter was going through, and gave me a good perspective. Another memoir called "Brave Girl Eating" also helped me a lot as we went through the beginning of my daughters treatment. I recently read a graphic novel called “Lighter Than My Shadow”. The visual representation of the authors experience spoke louder than words. I wish I had read it while we were in the midst of our struggles.
- I read through “the power of a praying parent” and wrote out my own lengthy prayer that drew from key themes in the book. I still have it!
- Encourage your friend to find a parent group or at least one other parent who has been through this or is going through this right now. Its hard to not compare situations in a competitive way, but its also comforting to know you are not the only person to be going through this.
The real goal of our hospital stay was for me and my husband to learn the skills needed to be successful once we were discharged. The nursing staff helped us learn about how disorders work, and helped us understand what our daughter was going through. When we were overwhelmed in a meal, and didn't know what to say, they gave us the words. When our daughter shared what she was thinking and would wail and sob and scream after a meal, they stood by us and gave us strength. The social workers offered us counselling and helped me see where to go next and tease out the disorder from my child. The pediatrician helped me understand the metabolism side of things and the health concerns they were watching for. The psychiatrist examined us all to make sure there was no evidence of OCD or psychosis or an anxiety disorder or depression in the mix with the eating disorder. They often present together. The Dietitian was very important. They taught me what a portion size should look like, and helped me understand how to plan a diet that was balanced, and had enough calories, and was not too large a volume. At the beginning, the Dietitian allowed us to say "you have to eat this because the expert says its the right amount". At the beginning, we did not know enough to take ownership of that. Later, things shifted, and the responsibility for nourishing my child became mine again. The teachers helped us understand that education is not the top priority and we may have to do some catch up when our daughter is healed. The teaching time allowed her to feel some normality in her routine and it gave her things to do. The child life specialist made everything easier. She gave us things to do, and made blood work bearable. My daughter connected with her more than any other staff person. It was comforting to feel like we were not alone, until we were ready to try to do things on our own.
- This is going to be a brutally hard 3-4 months. Hopefully things start to get better and in a year or 18 months they may feel peace again. I’m glad your friend has you to cheer them on. It’s a long marathon and it’s easy to get discouraged.
Our battle was fought hard when my daughter was 10 and 11. At 12, she was discharged from the eating disorders program. She will be 14 soon, and continues to do well. We will remain watchful regarding her weight and attitudes toward food throughout her life. So, far she seems to be fully healed. I hope we never have to walk this road again.
