by Dan D
We are 3.5 years into treatment with our now almost 16 year old daughter (Marie). It’s been a slow fade back to “normal” in our house and not sure what the collateral damage will be long term to our two other children (a pre-teen and a teenager). I thank God that we are where we are now and that we made it through the thick of it. We lived with a hardcore demon for a while – not sure the exorcist had anything on our daughter – cursing, breaking things, running away, hitting, painting red tears on her face, carving HELL on her desk after painting it red, yelling, banging, sleepless nights with a camera in our hallway to detect movement because we were afraid she would try to sneak out or hurt herself, etc.
When Marie was at her worst and carrying on there was no level of reason or compassion that would bring her down. I remember one day when my wife was mentally exhausted, on the edge of surrender, and convinced our daughter was possessed. She was looking at my daughter but yelling at the daemon to get out of our daughter and leave her alone. One day, when at my wits’ end, I got right in her face like a drill sergeant and yelled back at her “you will stop yelling, you will listen to me . . “ and then . . . . peace. The stern commands seemed to have hit the mark and the demon would disappear for a time and she would listen (as much as possible for a teenage girl with Anorexia Nervosa). There were moments in our journey where one of us thought it would be best to give in and send Marie to an inpatient program but we managed to make it through those moments and stick it out at home with FBT.
I find a humorous irony in how simple the treatment plan is but how complicated it is to accept and navigate:
- Accept that your child has the disorder: both parents must do this.
- Don’t rationalize unusual behaviors and weight loss.
- Feed, Feed, Feed as advised by the Dr. and don’t delay – weight restoration as quickly as possible and of course, this must be done under medical supervision if the loss is severe so as to avoid refeeding syndrome. During weight restoration, the child and parents need the regular support of a therapist, medical physician, and nutritionist. These professionals should be routinely involved until fully weight restored and then taper from there as appropriate. My wife and I struggled here – as my wife tried to balance the teenage girl being sensitive to weight gain, I wanted to get to our goal weight +2. We both also bought into a false sense of security and prematurely tried to give some level of control back to Marie before she was ready – Unfortunately, this prolonged recovery as things are not always as they appear.
- Be a united front as parents and have the strength to do things that go against what might be considered “normal parenting”. Part detective, part compassionate parent, part drill sergeant, part coach. Be purposeful about making time for your marriage as well and consider counseling – smart people talk to smart people and hurt people hurt people.
- Once restored, maintain, maintain, maintain for a minimum of a year while rebuilding the relationship, trust and gradually giving some level of control back to your child.
We used FBT and I believe, for us, this was a much better approach than long term inpatient therapy.
A few months into Marie’s treatment we thought we were doing FBT and doing what we were supposed to do. We were wrong! This resulted in a significant delay in our progress. It is important to do our homework on the treatment. We now believe we should have had all three professionals involved (therapist, nutritionist, and physician) continually. Our daughter appeared to be moving in the right direction but was not at the weight she needed to be and because of this, she was basically living in purgatory. Had we been having regular visits with a medical doctor familiar with FBT, this most likely would not have been the case. When we had a setback, we scheduled an appointment with Marie’s physician only to learn our daughter (who looked okay) had a low heart rate and almost had to be readmitted. Once we had the doctor and nutritionist back in the loop we realized how we could have benefited from their involvement all along and no doubt this would have resulted in more progress. As a matter of fact, the FBT model called for their involvement but for some reason, this slipped through the cracks.
On the detective note, don’t discount your spidey senses.
For us, this was a 24/7 battle and we became incredibly in tune with Marie’s mannerisms and behaviors. Our spidey senses would tingle and almost without fail a new discovery or a rediscovery was made. We got to the point where we could tell when something was up which led us to investigate and discover behaviors that we were able to address in a timely manner. Throwing food away at school, standing to watch TV, pouching food in cheeks and spitting it out when out of site, water loading and holding pee, hiding food in her bedroom, hiding water bottles in her bedroom to water load if she thought she was going to be weighed, were all examples.
One of the toughest things we had to do was have our freshman daughter eat her lunch with the supervision of the school guidance counselor. Fortunately, the counselor was very compassionate and respected Marie’s need for confidentiality. We knew Marie would try to hide food so to be sure she was eating everything, my wife created small forms that she would place in her lunchbox each day. The form listed everything that was supposed to be in her lunch and had to be signed by the counselor to be sure everything was making it to lunch and Marie was eating. We then discovered that Marie was removing slices of cheese or meat from her sandwiches or removing a portion of whatever she had in her lunchbox prior to going to the counselor’s office. We then started placing zip ties on her lunch box that had to be cut off by the counselor. Well, one day after getting off the bus from school our Marie made a detour to the local dollar store and bought her own zip ties and . . . .you guessed it, she started cutting off the ties we put on, removing some of the food and replacing the zip tie. After searching her school bags every day from school for zip ties and changing the color of the ones we were using we thought we had everything covered until . . . . . one day she came home from school and we noticed glue had leaked on her bag and her lunch box. Marie explained that she had glue in her bag and it must have opened up and leaked out. It took a while but we got the confession that she had cut the zip tie and attempted to glue it back together –
I’m actually laughing as I’m typing this. How can you not find humor in that?
I have no doubt that many people would be extremely surprised to learn about the lengths someone with anorexia will go to save a single calorie or burn one. Had we not thought to search her bags, her room, and put cameras in some of the rooms in our house many of the behaviors we discovered would have gone undetected, grown deeper roots and further delayed Marie’s recovery. AGAIN: don’t feel bad about the things you are going to have to do that might seem abnormal or feel that you are invading their privacy – they need your help, it’s not who the real child wants to be and it’s tough love.
When Marie was in low energy mode and the demon was rearing its ugly, unwanted head, we referred to it as “Not-Marie” a tip we had learned from the book “Brave Girl Eating” written by Harriet Brown. We learned to recognize that when the ED had control of Marie she was not her true self. I worked Emergency Medicine for 15+ years as an EMT and RN – sometimes when a person has a head injury, their eyes are open and they appear to be fully conscious when in fact they are experiencing an unconscious consciousness – if that makes sense. These people can engage in conversation but might repeatedly ask the same questions or not have any recollection of events during this period similar to sleepwalking. I likened this to Marie when she was in the thick of the disease and in low energy mode – not Marie. As parents, we were able to better treat Marie as we dealt with Not-Marie in the ways that were necessary.
Marie remembers some of her journey but fortunately much of it is a blur to her.
Finally – seeking out the right resources and knowledge bring understanding and hope. F.E.A.S.T. was a good tool for us. We probably did not take as much advantage as we could have but definitely a good resource throughout this journey.