Friends: at the F.E.A.S.T. conference in Washington DC, I was approached by a mother (we’ll call her Kathy) who thanked me for helping her out from a distance with my blog titled “Determining Ideal Body Weight”. She told me how she struggled to come to grips with the weight gain her daughter truly needed to get well. I was very impressed by her eloquence, humility and dedication to her daughter. I asked her if she would consider writing a guest blog so that other parents struggling with these same issues could feel heard, understood and supported in their quest to do the right thing.
She graciously agreed and so here it is. I hope it proves a springboard for more conversation among us.
Our daughter was diagnosed with Restrictive Anorexia Nervosa (RAN) when she was 11 years old. She was born a little premature and was a small baby. By 18 months, she developed what would be her body for the next 8 years. She was a solid toddler, strong and active. At the yearly pediatric checkups, she would be in the 75 – 80th % for weight and height. When she started school, she had a good relationship with food and seemed comfortable with her body.
At 11, she started wanting to eat healthy food. This surprised me, but I didn’t really concern me as I just knew that she liked junk food and would probably go back to her old eating habits. She did not, and this was the beginning of a downward spiral into restriction of an increasing number of foods.
We did notice that she was thinning out, but, in our ignorance, we believed this meant she was stretching out and that it was a natural process girls went through. I didn’t realize at the time that the opposite happens to girls as they are getting ready to hit puberty; they fill out as the first symptoms of puberty appear. A relative was visiting us at that time and she pointed out our daughter was not eating at the table. I started to insist she eat her supper. She started fighting back.
I took her to our pediatrician, who took all of her vital signs, did some blood work and asked her a few questions. She privately asked me a lot of questions and said that our daughter was either at risk for RAN or that she already had it. She diagnosed daughter based on the fact that she had grown 3 inches in the previous year but had not put on weight. She also based diagnosis on her behavior during the visit. The pediatrician said she had to refer us to the right person because if we went to the wrong therapist, our daughter could be messed up for life. She had seen this happen to too many girls, and she was not going to let this happen to our daughter.
We saw the therapist, who confirmed that our daughter had RAN. She was the youngest child that this therapist had ever treated; previously, her youngest patient had been a 12 year old. She told me that RAN was a biological brain disorder, that we had not caused it, our daughter hadn’t chosen it and that we had to be in charge of her food. We had to prepare her food and she had to eat it.
The therapist asked our pediatrician to set a weight goal. Instead, we saw a different pediatrician in the practice, who sat with the chart in front of us, drew a circle between the 45% and 55% and said “we don’t like kids to be much above or below this area”. She zoned in on the 50th percentile and gave us that number, give or take 2-3 lbs, as her target weight. There was no consideration given to her growth trajectory up until that point or to the fact that she was a growing pre-pubescent child whose weight target should be moving upward for the next few years.
I will not go into the details of the re-feeding process because it is not the theme of this story. We struggled trying to get her to put on weight for the next 15 months. She was underfed and underweight for about 18 months. Finally, I bumped into the ATDT forum and learned the “how to” of feeding my child at home through the use of Family-Based Treatment (FBT) and the Magic Plate approach. The therapists and pediatrician were on board with us helping our child through FBT and we worked as a team. The weight target remained at the 50th percentile.
Our daughter reached this target in about three months. The problem was that our daughter was still desperately ill. We saw no abatement of her symptoms and the thoughts were more torturous at this point than before we had started re-feeding her. However, on the outside, she looked breathlessly beautiful. The bony and pinched look was gone. She looked healthy, willowy as if she could have been in the Justice for Girls Catalogue as a model. People would stop us to tell us how beautiful she looked and tell her that they wanted her legs. I both swelled with pride at the compliments and at the same time raged against people making those triggering comments to her. I wanted her to stay that way: to have the ideal beautiful lean body AND be healthy at the same time, but it wasn’t happening. The fact is that she had come to like her new body and didn’t want to put on any more weight. By this time, she was 12 years old.
I went back to the ATDT forum and presented this problem. Why is she still so ill when she looks so healthy? Both the therapist and the pediatrician tell me that she is at her “goal weight”. How long will it be until the ED thoughts go away? The answer was that the weight needed to be higher. Since she was a growing child, we couldn’t go back to pre-AN weight. Therefore, we had to look at where she had tracked historically. I asked for some guidelines through ATDT forum and Dr. Julie O’Toole graciously wrote an article on Weight Restoration in Children and Teenagers. I took that article to my pediatrician and therapist and asked them to go back to the growth chart and take another look. We all saw that daughter had tracked in the 75 – 80th percentile most of her life. This meant that she had another 10 lbs to go.
I wrestled with the implications of putting 10 lbs on a 5’1” child. I knew that she wasn’t going to be willowy any longer. I was tortured by her accusations that I was trying to make her fat because I wasn’t sure that I wasn’t. I started pushing more calories and more food and as her willowy figure started filling out and those perfect looking legs started filling out into fuller and chunkier legs, I grieved the loss of that beautiful body. This became such a struggle for me because I was dealing with my own baggage. I had been an overweight child and teenager and I was afraid that I would make my child overweight too. I also knew that I had to be committed to this process in order for it to succeed. I had been successful with re-feeding because I had blind faith in the process. My daughter knew without any doubt that I believed in what I was doing and that I WOULD defeat ED. This time, my ambivalence was affecting the process because even though I was feeding her while faking confidence, in my heart I was trying to hang on to my daughter’s ideal body.
One day, I had to face my fears and my ambivalence. I was alone and I said out loud “what is the worst thing that can happen to my daughter?” The answer was that she would die. So, the obvious follow up question was “would you rather she is dead or fat?” This took my breath away as I weighed the implications of the two options. I let the thought hang in my mind and then said to myself.” I want my daughter alive and well and if that means that she is going to be fat, then so be it. I’ll accept that.” I grieved the loss of the child who would never be willowy and healthy at the same time and accepted that she wasn’t meant to be that way. After that I committed to the process with a vengeance and we succeeded in putting on those last 10 pounds.
One day, my daughter woke up and she was a different child. It was as if the chains that had her tied to the disorder had fallen off. She ate her breakfast without protesting. She came home for lunch and enjoyed her lunch, etc. When this happened again the next day, I took her in to our pediatrician’s office to be weighed. She was exactly at the 76th percentile of weight. Another side effect of being at this weight was that her natural hunger kicked in and she started eating the amounts that her body needed without us having to cajole her into eating. Since she was still growing, her weight became a moving target. She would go through periods were she would overshoot her target by a few pounds and would look a little chubby. Anytime this happened, I started worrying that she would become too heavy but a few days/weeks later, she would grow taller. This process lasted for about 18 months. Every time I tried to manipulate her caloric intake by cutting back, so that she wouldn’t overshoot her weight too much, her disordered behaviors and thoughts would come back and she would have trouble sleeping. By this time she was able to tell us that she was hungry or starving all the time. So, after a while we just fed her what her body needed and quit worrying about weight or targets. Once she was well into recovery and her cognitive abilities were back, we did have some heart to heart talks where I said to her, when she demanded some answers, that she was biologically and genetically programmed to be this way and that she would never be “thin” and healthy. It wasn’t who she was meant to be. I think that she also had to go through a grieving process where she had to accept that she was not going to be tall or thin.
We are now five years into recovery since we hit that first weight target. My daughter is now 17 and is an average size teenager. She is so beautiful and healthy, both inside and outside. She has a very free relationship with food and loves and takes pride in her body. Today, I can’t fathom that I ever wanted her to be willowy and thin because it simply wouldn’t be her. I would fight to keep her at this weight range if anything or anyone were to try to change her into someone that she is not meant to be.
I wish that I had never struggled with those thoughts. However, my feelings were very real and I am sharing them today because had I let them take over the target setting process, my child would still be struggling with this disorder.