Our daughter’s multi-state, multi-facility anorexia treatment process

By Ariel Selwyn

In the Spring of 2018 my 13-year-old daughter wanted to “eat healthy.” There is nothing wrong with eating healthy, I thought. I am a certified health coach and am a huge advocate of eating healthy. My daughter began reading food labels on some things and I thought, I’ll keep an eye on that. This went on for a few months with no other signs of anything unusual.

Until, one day we were riding in the van with my daughter and her two younger siblings and the two littles asked if we could grab some lunch. I happened to look in the rearview mirror at the same time. My daughter had a look of fear come over her face. That’s the instant I knew that something more serious was going on. I made a mental note to talk to her later that day.

Later on I asked her, “are you just wanting to eat healthy or do you feel guilt or shame when you aren’t able to eat a certain way?” She burst into tears. Yep, this was more serious than I had originally thought. I told her I would get her professional help and not to worry. We would handle this and it would be ok.

She said that she didn’t feel fat, but she was afraid to eat certain foods and she wasn’t sure what was happening. She said she would feel out of control sometimes with food and feel the need to exercise in her room to make up for it. I knew these feelings all too well, as I had battled an eating disorder myself.

I Googled professional help in the area and the closest I could find that looked like an appropriate place that also took our insurance was a center in Northern VA, about an hour and a half from our house. I made an appointment right away. It took a few weeks to get my daughter seen and in the weeks leading up to the appointment I found out there were days that she was only eating cucumbers and blueberries. I began to sit with her at every meal to make sure she was taking in food. At this time my daughter obliged as long as I was there sitting with her.

Finally, our appointment came and after several hours of many thorough questions we admitted my daughter to an intensive outpatient program which was an all-day program six days per week. It was exhausting with the traffic and the long drive on top of work, but it was worth it. My daughter was there for about a month.

However, things snowballed as the eating disorder became stronger and my daughter’s weight dropped as she ate less and less. She was admitted to Children’s National Hospital in Washington DC and a feeding tube was put in place. My husband and I took turns staying overnight with her. She was there for about five days and transferred from there to a treatment center in NC where she remained for four months.

During her time in NC, she was on a rigid meal plan with goals put in place by her team. If she didn’t meet those goals with food intake, they would present her with an Ensure supplement. If she didn’t intake enough by mouth of the food and/or Ensure, then the feeding tube would be put back in place. The tube went in and out at various times during the four months.

Even though we knew she needed this level of care, including a therapist, psychiatrist, primary care doctor, around the clock nursing staff, dietician and around the clock therapist assistants, she also unfortunately picked up other behaviors from being around other patients, including self-harm. Maybe this would have happened anyway. There is no way to tell. But some other patients there were engaging in self-harm, and my daughter hadn’t engaged in this previously.

My husband and I took turns traveling to NC every weekend. We took off work most Fridays to be down there as much as we could. We got special permission from her team to eat as many meals with her as possible, and I coached her through as many meals as I could, battling the lies of the ED with her.

However, once observing these new behaviors (e.g. self-harm), we decided it was time to move towards getting her home more quickly to get her away from the environment so she wouldn’t pick up any more behaviors. We also thought home would be the best environment for her.

Unfortunately, this plan backfired. Although we had come home with a meal plan and were trying to put an outpatient team in place, it wasn’t enough. Once we saw that she had lost weight in two weeks we knew something was up. We asked, and she told us she had been hiding and throwing away food without us knowing. This was partly our fault as parents for not watching her closely enough. However, there also needs to be responsibility and trust on the child’s part or it will never work. They need to want recovery or it will never be lasting.

At this point we had to admit her back to Children’s Hospital. While at Children’s Hospital they reinserted the feeding tube and said that they would not allow her to return home until she was eating 100% of all meals and snacks. She hated it at the hospital, so she obliged and was home in a week.

Unfortunately, it didn’t end there. She stopped eating again as soon as she got home, and we had to re-admit her back to the treatment center in NC. She stayed there for seven months with a feeding tube the entire time other than two weeks with no food intake at all other than a couple of snacks. She seemed to have lost all motivation, and the eating disorder was stronger than ever. She shut down emotionally as well. She no longer wanted to talk to us as parents and didn’t see any point in talking to her therapist.

It was devastating and hopeless. We had family therapy and group therapy, but we weren’t getting anywhere. My husband and I were exhausted from the traveling, and I was emotionally exhausted from worrying and feeling hopeless. It was draining on the entire family. The other kids were tired of mommy and daddy being gone and didn’t understand why she couldn’t just get better. We all knew it wasn’t her fault, but it was hard to hear her say things like, “I don’t want to recover” when we were trying so hard.  

After around Month 5, her team said that they could no longer help her and they wanted to transfer her to another facility. This was like a punch in the stomach. How long would this go on? They wanted to transfer her to another state even further away. How would we handle that? It was already so stressful on the family. We have three other children.

Although the two-month process of submitting applications to one treatment center after another was long and difficult, we are overall thankful that one door closed after another as far as the long-distance facilities were concerned. After the long wait, a spot opened up closer to home in Northern Virginia, only a little over an hour away.

The transfer was difficult and there were many adjustments that had to be made, but we are thankful that she has opened up to us again and gained some motivation. We are thankful that she began to take in food by mouth again.

It wasn’t all rainbows and sunshine. After only one day in the eating disorders unit, she had a self-harm episode and had to be transferred to the mental health unit for two weeks. Thankfully, she hated this unit so much that it was enough motivation for her to stop the self-harm, at least for now. We are thankful for this improvement. This facility is not perfect. We have had some issues with the nurses and director not being kind and we have had to address this. However, there have been positive things that have come out of it like my daughter getting some motivation back and her clicking with her therapist.

It has been  a long journey. It is so hard when the eating disorder takes over and you have to hear your child say they don’t want recovery. My heart would break when I spoke to my daughter, and I couldn’t fix it for her. My heart breaks when she is sad, and overwhelmed and scared and hopeless and I can’t make it all better. My heart breaks that there are treatment centers all over the US and even worldwide because our children are suffering with this and there are children out there not getting the help they need.

If you have a child who is suffering, please get them professional help and know that you are not alone as a parent either. They need you. They need to know that you are there for them without judgment. They need to know that it isn’t their fault because they didn’t ask for it and they don’t know what is happening to them.

There are times that I am not proud of. There are times that I let my frustration and exhaustion get the best of me. There are times I forgot that it was the eating disorder speaking and acting out and not my daughter. Looking back, I wish at those times I would have had more patience. So, for you, get help. See a therapist. You need support too. It wasn’t until towards the end I realized I needed that support too. Hugs, my friend. You can do this.

Thankfully, after trying many medications, the right dose of Lexapro was what did the trick for my daughter. She is finally home and living and eating freely. We are SO thankful to have her home again and to witness the freedom she is enjoying with food. We know that the chance for relapse is high, and I know that from my own experience as well. 

I battled my own eating disorder. Mine started in college and I relapsed multiple times as an adult. I didn’t get control of mine until my mid-thirties when I was put on the right dose of Lexapro. For more on my eating disorder story and recovery, you can find my book, Though the Mountains be Shaken. 

See Our Guide For Parenting a Young Child With An Eating Disorder