A Father's Story
Reprinted on docsmed.com with permission of Randy Schellenberg.
I want to start out by saying that despite the pain and suffering our daughter Carolyn endured during her diagnosis with Anorexia Nervosa, I am thankful to all the doctors, medical staff, psychotherapists, nutritional counsellors, nurses, social workers, and eating disorder counsellors for their efforts during her illness. I know that each of them did what they thought was the right thing. Unfortunately, in the end, these efforts were somewhat misguided and ended up prolonging her suffering rather than alleviating it. During our daughter's illness, I discovered numerous flawed beliefs and protocols in the medical, and psychiatric communities that almost ensured that a correct diagnosis could not be reached.
I harbor no ill feelings toward anyone involved with her case, and in fact, blame myself more than anyone for the unnecessary suffering she endured. I believe it is a father's responsibility to protect his children from harm, and in many respects I failed in that regard. In retrospect, I wish I had been more skeptical of the conventional wisdom, and had been more involved early on during her illness. I should have insisted on extensive medical testing from the start. Many times I thought my daughter was losing her sanity, or that she was just acting stupid. I regret things I said to her and to my wife Louise during the many heated arguments we had at mealtimes. According to everything I had been told, our daughter just needed to achieve objective reality and decide to eat. Her behavior made no sense to me at the time and there were times when I had given up hope of her ever recovering. If I had known at the start that she had gallbladder disease, her behavior would have made complete sense to me, and I would have been far more understanding and sympathetic. Had appropriate treatment been given early on, she likely would have been spared the terrible trauma and suffering she endured for over a year. In the end, we count ourselves blessed to still have our little girl with us and completely recovered from her terrible ordeal. She is back to her old self, and our family has survived intact. For this I am extremely grateful.
Our story has a happy ending. Unfortunately, many families have not been so fortunate, and have either lost a beloved child through complications of malnutrition, or due to suicide. Other families have been torn apart by the stresses placed on relationships by the eating disorder. Many anorexic patients have had their lives fall to pieces due to their illness, and others have incurred permanent organ damage due to malnutrition. My heart goes out to these individuals and their families.
The diagnosis of Anorexia Nervosa and its subsequent treatment brought our only child to the brink of death, and nearly destroyed our family. In the end, we discovered that the diagnosis was incorrect, and that the underlying cause of her refusal to eat was gallbladder disease.
Coming up with the correct diagnosis of cholelithiasis and cholecysitis was not easy, mainly due to the entrenched beliefs of almost every physician, psychologist, and eating disorder counsellor we consulted with. A simple 10 minute abdominal ultrasound showed the presence of gallstones. However, even after gallstones were confirmed, we could not convince any physicians that these could be causing her eating difficulties (even though most medical literature identifies anorexia as a common presenting symptom of gallbladder disease). Fortunately, I found one physician who agreed with me, and in the end he saved our daughter's life. Dr. W.P. Smedley, of Wilkes Barre, Pennsylvania is a gallbladder expert, and has a lifetime of experience troubleshooting digestive disorders. He was well aquainted with the symptoms of anorexia and weight loss associated with gallbladder disease. Fortunately, I located his website (www.docsmed.com), and was able to contact him for advice on what to do. In the end, we had no choice but to travel to Pennsylvania so our daughter could have her gallbladder removed. None of the experts we saw in B.C. thought the gallstones would have anything to do with our daughter's refusal to eat. They were all convinced she had a mental illness, and needed more psychotherapy (see Disturbing Trends in Medicine and Diagnostic Criteria for a possible explanation of this).
Upon having her gallbladder removed, her appetite returned within weeks, and her digestive problems resolved. Whereas before the operation she was unable to gain any weight except by force feeding in the hospital, after the operation she slowly but steadily gained weight until after six months she had returned to her original weight before her illness started. This was without any nutritional counselling, mealplan, or psychotherapy.
Some of you reading this story may dismiss our story as a rare anomaly, certainly not worthy of much more than a passing glance. It is not. The subjective diagnostic criteria for Anorexia Nervosa cited in DSM-IV and the minimal diagnostic testing done by most eating disorder programs creates the potential for a myriad of cases like ours. The goal of this website is to raise awareness of these glaring deficiencies, for it is quite probable that many, if not most of the extreme cases of AN actually are due to an underlying digestive disorder.
The whole experience our family went through was very traumatizing, and it would be much easier and less painful to just forget about it. However, there may be thousands of patients in eating disorder programs right now who have underlying medical disorders causing their disordered eating. And very likely few tests will be performed to try to identify and properly treat these disorders, due mainly to the widespread belief that anorexia is a purely a psychiatric disorder. It is imperative therefore, that awareness be raised of the glaring deficiencies in eating disorder programs. It is my hope that by telling our story, others might be saved from such a traumatic experience.
Our daughter is a great kid. She's always been a happy child, done well in school, and made her parents very proud. When she decided to join the track team in grade eight, I was cautiously supportive. I had been in a track club for 10 years starting at age 10, and had hoped she would find something else that would instill more lifelong skills. My wife and I were impressed with her determination however, so we tried to be as supportive as possible.
We had noticed that our daughter had become quite a fussy eater in the year or two prior to this. We didn't think much of this, since she looked healthy and seemed to be of normal weight. I was sure this was just a stage she was going through.
At 87 lbs. and 5'-1" tall, our daughter was fairly light, but we weren't too concerned (I was 5'-1" and weighed 90 lbs. at age 13). She had not yet entered puberty, but this didn't concern us since both my wife and I had been late bloomers also. She began running in the early Spring of 2001, to get in shape for the track season. She built up to about 4km (2-1/2 miles), 4 to 5 days a week, and also eventually could do about 50 situps and 10 to 20 pushups a day. I knew these weren't excessive, since at her age I used to run 10-15 km per day and often would do 250 situps at a time.
Her weight was dropping slowly but steadliy, and her performance was also improving. She was quite encouraged by her improved times in running, and she could do more situps, pushups, and chinups than most of the boys in her gym class.Her track coach told me "she has a genetic gift for running", and I thought maybe she had inherited some of that from me. I noticed, however, that when I joined her on her runs, she seemed to lack stamina and became tearful if I ran ahead of her.
The First Signs of Trouble
We became concerned that her appetite didn't seem to be increasing with all the exercise she was doing. She was still a fussy eater, and in fact seemed to be getting fussier. At suppertime, she would often take one or two mouthfuls of food and then say she felt "yukky" or full. By May of 2001 her weight had dropped below 80 lbs.
In mid-May, a friend and I had planned a day of ski-mountaineering, and our daughter was very keen to join us. Being an expert skier, she certainly was capable. I was very concerned about her dropping weight however, and said it wasn't a good idea. She was determined to go and in the end I relented. We skied up the mountain for several hours, and neither my friend nor I could keep up with her. At the top of the mountain, when we stopped for lunch, she wasn't hungry at all, and she only ate a few little snacks. We skied almost non-stop to the bottom, and afterwards I was extremely sore and tired, and she felt just fine. At the time I was both puzzled and amazed how she managed to accomplish this without getting hungry or tired.
It was on a shopping trip for bathing suits that my wife realized our daughter's weight loss was becoming extreme. We took her to the doctor, who suggested nutritional counselling. She began visiting the nutritionist every week at the local hospital for counselling on diet and nutrition. She was put on a meal plan to ensure she got enough calories.
Mealtimes, which had always been a peaceful family time, now became a battleground. My wife would make delicious, nutritious meals, serving what we thought was a suitable amount for our daughter. Often she would take one or two bites and say "I'm not hungry", or "I feel yukky". We at this point were convinced she might have an eating disorder, and started to think this refusal to eat was some sort of psychological problem. No one had mentioned to us that many chronic medical disorders can cause appetite loss, so we thought this was a conscious decision to not eat.
I insisted that she finish her meals. This caused many arguments, and our daughter would often break into tears and run to her room. She would often push the food around on her plate, eat one pea or corn kernel at a time, or cut her food into tiny pieces to make it look like she was eating. We noticed that she particularly was avoiding fatty foods, refusing to eat most red meats, butter, or gravy. She wouldn't eat chicken unless the skin was removed. She refused to drink milk, and insisted on drinking soy milk. If she helped with the shopping, she insisted that we only buy the low-fat or no-fat products. Most of the foods she used to love as a child she now seemed to avoid.
Severe Malnutrition and Excessive Exercise
Her weight continued to drop, and by June 2001 had reached 70 lbs. She looked very malnourished, almost skeletal, and her face was becoming hollow and emaciated. Her teeth and gums seemd to stick out and her face looked like that of a concentration camp victim. Her skin was very pale, and she had lanugo hair growing all over her neck and shoulders. We insisted that she stop all exercising, and any activities that used up energy. She was not allowed to ride her bike, or even walk more than a block or two. This was devastating for her, since she was still determined to pursue her running. She seemed to be very agitated, restless and always running instead of walking, even if it was just from the house to the car. Several times we caught her doing situps in her room. One night I heard her doing situps in the bathroom at 2 am. Several times she snuck out on a bikeride by herself, so I let the air out of her tires so she wouldn't be tempted to ride it.
Emotionally, she was a wreck. She didn't want to get together with friends, and her friends didn't understand her behavior.She became withdrawn, and socially isolated. She continued to do very well in school, although she would spend far too much time on her homework, doing far more than the teacher expected.
We had planned several backpacking trips to the Rocky Mountains that summer, and I was sure that if she could only decide to eat normally, she would put on enough weight so the trip could still happen. Our daughter loves hiking, and I thought the prospect of the trip would be great incentive to put on some weight. Unfortunately, her weight just continued to drop.
She began regular visits with a psychiatrist, pediatrician and dietician. My wife and I also started attending a family therapy and support group at the local eating disorder clinic. Other parents with anorexic children were very supportive and understanding, and we were given several books to read about eating disorders. From attending these sessions and reading these books, we became convinced that our daughter had a full blown case of anorexia nervosa. We learned how low self-esteem and social pressure to be thin were causing our daughter's eating problems. None of it made any sense to me, but I trusted the experts, since they seemed to have all the answers, and a lot of experience in treating these disorders.
Mealtimes continued to be a nightmare, with much arguing and hard feelings. I said many things to our daughter that I regret, since I believed that all she had to do was decide to eat. It seemed like she was trying to control the family with her refusal to eat. We also noticed that she wasn't eating her school lunches, and most days her sandwiches were left uneaten. When we confronted her about this, she promised to try harder to eat all of her lunches. She also insisted on making her own sandwiches since she didn't like mom's sandwiches. Things seemed to improve, but it was not long after that that my wife discovered our daughter was starting to hide the food that was in her school lunch, claiming that she had eaten it. She also claimed she was eating her breakfast, when in fact she was throwing the cereal in the garbage. This was devastating for my wife and I, since we had never known our little girl to tell a lie. We couldn't trust her anymore to tell us the truth about her eating habits.
The First Hospitalization
By the time school was out in early June, her weight had reached 68 lbs., and she was admitted to the pediatric ward at the local hospital for force feeding. All our family plans were put on hold. I was convinced that our daughter just needed to acquire some common sense, and that surely being put in the hospital, or "food prison" as she called it, would make her snap out of this wierd behavior. Interestingly, she was not allowed to have any visitors, except my wife and I. We were told that her refusal to eat was a cry for attention, and that having visitors might reinforce her behavior.
All her meals had to be supervised, usually by my wife or me, although some close family friends also helped out when we couldn't make it. She had to finish all of her meal, and then she was not allowed to visit the washroom for an hour after eating (the nurses were afraid she might induce vomiting in the bathroom). If she didn't finish her meal, she was required to drink a can of "Boost" or "Ensure" meal replacement drink. If she ate all that she was supposed to, she was granted hall-walking privileges or allowed to watch TV in the TV room.
My wife and I attended counselling sessions with the psychiatrist and a few social workers. We were told that our daughter was afraid of growing up, and terribly afraid of getting fat, which I just couldn't understand at all. (I had never heard this from our daughter, and she had never at any time in her life been overly worried about her appearance or body shape). One social worker discussed some art work she had done, and was somewhat concerned. She had been asked to sketch a happy scene, and had chosen to draw a picture of our family hiking into a back-country cabin (an activity that has brought our family much joy over the years). He pointed out that in the picture, our daughter was holding my hand but not my wife's, and that this could point to some difficulties in the family relationships. Since I'm generally a skeptical person, I became a little upset at his speculative musings. After challenging his views on our daughter's artwork, I began to sense that the counselling team percieved me as uncooperative, and perhaps partially responsible for her condition.
Since we had planned a summer full of backpacking, hiking and biking, I still was optimistic that our daughter could "get her act together" and we might still be able to do some of these activities. She seemed to be eating all that she was required to eat, and her weight was starting to go up. Indeed, after 5 weeks in the hospital, it had gone back up to 80 lbs. We were told however, that it would not be safe for her to do any strenuous exercise, as her heart may be close to failing due to her frail condition.
On the last few days, she was allowed passes to come home for a few hours, or to go for a donut or a short walk. One of the nurses took her for lunch at a local restaurant, to test her ability to eat normally. She seemed to do okay. By the middle of July, she was discharged, but would have to adhere to a rigid mealplan at home and not do any exercise.
Once at home, however, it was next to impossible to keep her from exercising in some way. She always seemed to fidget and move her legs, and would run, never walk, even if it was just from the house to the car. She was so used to being active, it was driving her crazy not being able to do the things she loved. At times she became very depressed, and mentioned often that it would be better if she were dead. I stopped riding my bike to work, so she wouldn't feel like she was being treated unfairly. We had to watch her all the time to keep her from burning too many calories, and this became a source of bitter tension in the family.
Mealtimes were very difficult, since we were now enforcing the rigid mealplan. Most meals became a time of bitter arguments and yelling, trying to get her to finish her meals. She often insisted that she make the meals, as she didn't like what Mom made most of the time. She usually claimed to be really hungry before meals, but after only a few mouthfuls of food she would say she felt full.
I devised all kinds of incentive plans to encourage her to eat more. All of these were met with resistance and emotional outbursts. One of these plans tied permitted activities to the amount of weight she gained. This was a dismal failure, and caused hard feelings between us. Nothing seemed to work, and she failed to gain any weight. Her weight fluctuated within two or three pounds of 80 lbs.until in December of 2001, arrangements were made to readmit her to hospital for force feeding.
Readmitted to Hospital
This second hospital admission was to be a very traumatic experience for all of us. Our daughter refused to cooperate, and would not go to the eating disorder clinic because she knew she was going to be admitted to the hospital. My wife called me at work and begged that I come home because our daughter was refusing to get in the car. She asked that I come and carry her into the car. I thought about the prospect of this, and just couldn't picture myself dragging our sweet little girl kicking and screaming into the car against her will.
The psychiatrist kindly offered to come to our house to help get our daughter into the car. When our daughter learned of this alternative, she finally complied. At the eating disorder clinic, however, she kicked herself free of the psychiatrist's grasp and bolted at the first opportunity. It was dark out and she was nowhere to be found. The psychiatrist called the police community liason officer to help, but fortunately she came out of hiding, and finally agreed to get in the car for the drive to the hospital.
I met my wife and the psychiatrist at the hospital, shortly after our daughter had been readmitted. I gave our daughter a hug, and tried to reassure her that everything would be okay. Not long after that, my wife and I were asked to leave so that they could put our daughter in her room. Our daughter did not want me to leave, but I was told I had no choice. She kicked and screamed to try to escape from the psychiatrist's grasp, and began crying hysterically and screaming "Daddy, Daddy, don't leave me here!" I could not hold back my tears as I reluctantly pulled myself away from her and turned to walk down the hall with my wife. I could not believe this was happening! We both walked down the hall to the elevator in tears as we heard our daughter screaming hysterically while the therapists wrestled her to her room. We were both in a state of utter despair and shock.
Once again she was not allowed any visitors, even though it was getting close to Christmas. This was a very difficult time for us, as my father, who lived 400 km. away, was dying of colon cancer. Though my father was gravely ill, he too was very distressed about his granddaughter's illness. My wife also suffers from ill health, and so I ended up missing a lot of work (I am very thankful to my employees for being so helpful through this crisis, as the business kept running smoothly). My wife and I would spend most days at the hospital with our daughter, and I would drive the 5 hours each way on weekends to visit my ailing father.
Up to this point I had only read a few best-selling books on eating disorders. I also began to surf the internet for more information about anorexia. Countless sites on eating disorders all seemed to say the same thing I had read in the best-selling books. However, some search engines directed me to medical websites. There I found that anorexia (loss of appetite) is often a symptom of many medical disorders. No one had told us this. From researching these sites, I began to entertain the idea that maybe our daughter simply couldn't eat.
I asked the pediatrician if all medical disorders had been ruled out, and she assured me they had ruled out any illness. I was a little skeptical about this however, since I knew that they had only done bloodwork and urinalysis. I had also heard through the grapevine about a case of someone who had been in an eating disorder program for three years before they found out she had a tapeworm causing her weight loss. I had also heard about a case where someone had been in an eating disorder program for several years before being correctly diagnosed with Crohn's disease. I began to think our little girl might also have some medical condition causing her problem. I asked if they could perform stool tests, since our daughter had suffered from several parasitic infections over the years. This was done very reluctantly, and the stool samples all were negative for parasites. I helped collect some of these samples however, and I noticed from the stool that our daughter was extremely constipated. She had never complained of this, although when I asked her about difficulty eliminating, she admitted she always had difficulty with bowel movements.
I asked if they could do more testing, so a flat-plate abdominal x-ray was ordered. It showed her colon to be full of hard stools, with some impaction. I thought this might have an impact on her appetite, but I was told that all anorexic patients become constipated from not eating enough. She was put on stool softeners. After most meals our daughter complained of a sore tummy, which we were told was normal, since the stomach had shrunk from not eating, and was stretching back to size. I remained skeptical however, since many of the medical websites indicated that constipation can suppress appetite, especially in infants and small children. Used to thinking in mechanical terms, I reasoned that very little food could go in if almost nothing was coming out.
Learning About Fear Conditioning
At about this time, what might seem a totally unrelated incident occurred that gave me insight into my daughter's problem. One of our dogs, a Jack Russel Terrier, loved to bark and was starting to annoy the neighbors. There seemed to be nothing we could do to stop this problem, until we tried a shock collar that gave her a jolt of electricity every time she barked. After conditioning the dog to the collar for a few days without the batteries installed (so it wouldn't learn to fear the collar), we finally installed the batteries. I took her outside, where she normally would immediately start barking at the coyotes that inhabit the bush behind our house. Always the skeptic, I expected the collar to have no effect and that she would just bark as always. Once outside, she barked once, and the collar gave a warning beep, then I saw the dog flinch as the electricity jolted her. She paused for about ten seconds, and barked a second time, receiving a second shock. This time she remained quiet for about a minute, then gave a third bark, again receiving a nasty jolt. That was the last time she barked, until the batteries wore down a few months later, when she began to slowly get her courage back to bark.
This rapidly learned fear response in the dog to something it had done instinctively for years, amazed me. Jack Russels are highly intelligent, high strung, fiesty little dogs, and they don't like being told what to do, yet three jolts of electricity completely changed it's instinctive behavior. Even when the collar was removed, the dog would not bark (after several months, however, she learned that she didn't get the shock if the collar wasn't on, so we had to always put the collar on her when we let her outside). I began to think that perhaps our daughter was experiencing something unpleasant when she ate, and had developed a fear response to many foods (see page on classical conditioning).
Discharged Against Doctors' Advice
It was getting close to Christmas and our daughter was becoming extremely depressed in the hospital. The psychiatrist wanted to put her on anti-depressants, but I protested, worrying that it would make her constipation worse. In fact, I was becoming convinced that maybe the constipation was the underlying problem, and that once this was addressed she might regain her appetite. I couldn't believe that such extreme constipation could result simply from not eating enough.
I was also becoming quite annoyed with some of the social workers and therapists, who seemed to think the problem was with our family or our parenting. I recall one therapist who told me, "your daughter thinks of you and your wife more as a brother and sister than as parents. This is not a healthy thing. You have to be more of a father to her, and less of a brother." I felt insulted, especially since she had only spent a few minutes with our daughter, and had only met me five minutes earlier. I challenged her statement, saying "how can you make a statement like that when you don't know me, you don't know my wife, you don't know my daughter, you have never been to our home, and you only just met me?" She responded that some of our daughter's artwork clearly contained some troubling features, and that the family dynamic needed to change. I was angry, and I began to doubt just about anything they were telling me.
A few days earlier a social worker had offered to show me a video of an Oprah show about Anorexia Nervosa, and I asked her if I could watch it. By now, though, word had spread on the ward that I was becoming uncooperative and confrontational, and challenging their views and advice. She said it was not a good idea for me to watch it, and that she couldn't find it anyway. I thought this seemed rather odd, so I insisted that she look for it, telling her I wanted to learn as much as I could about AN. She came out of her office after a few minutes with the video. "I'll watch it with you", she said. "Why?" I asked. "I'll watch it, then if I have any questions, I'll call you. You must be very busy, so please let me watch the video." She seemed very agitated, and reluctantly left the video with me.
The Oprah show featured several anorexic girls and their psychotherapists. No medical doctors were present, and not a single mention was made of differential diagnoses or any causative medical illness. Several therapists boasted of successfully treating their patients for many years. They seemed to have all the same explanations of the illness as the best-selling books I had read. I thought to myself, "none of this makes any sense!" I decided right then and there that we had to take our daughter out of the hospital and focus on the constipation problem. I didn't trust any of these people to help my little girl anymore.
We met with the psychiatrist and the eating disorder team, and I told them I wanted our daughter discharged. I was convinced that the constipation must be the problem, and that they were doing nothing about it. I was convinced that all the bed rest was exacerbating the problem. A heated argument ensued between myself and the psychiatrist. My poor wife didn't know what to think and was extremely distraught. "You would be going against my and every other doctor's advice if you discharge her", the psychiatrist warned, "and this could destroy your marriage" (my wife still trusted the eating disorder team, and disagreed with my view at the time).
I didn't want our daughter to have to stay in isolation in the hospital during Christmas. My father was dying, and this would likely be our last Christmas with him. I insisted she be discharged, and told her we would focus on the constipation problem, being sure to visit the doctor regularly to monitor her condition. The psychiatrist eventually relented, and she was discharged a few days before Christmas. She weighed 82 lbs.
Our Last Christmas With Dad
We spent Christmas with my Mom and all the family, and spent a lot of time visiting Dad in the hospital. I was so glad our daughter could be there to spend these last moments with her grandpa. Even though my father couldn't speak by this time, I could tell by the tears in his eyes that he cherished these last moments with his granddaughter. He so badly wanted our little girl to get better.
My father passed away in mid-January, and we all mourned the passing of a great father, teacher, friend and mentor. I always felt that if I could be half the man my father was, I would be satisfied with my life. I miss my Dad.
No Improvement, Weight Dropping Again
I needed to solve our daughter's eating problem real soon. Right after the funeral, my wife and I took our daughter in to the emergency department of one of the larger pediatric hospitals in my parents' hometown, hoping they might be able to help her. I told the doctors there that she was very constipated and maybe that's why she couldn't eat. Another flat-plate abdominal x-ray confirmed severe constipation. We were once again told that all anorexic patients become constipated, and that it would resolve if she would eat more. She was seen by a psychiatrist, and asked all the same questions she had been asked at our local eating disorder clinic. They stuck with the diagnosis of AN. All she had to do was decide to eat. She was discharged the same day. We drove the 5 hours home through a snowstorm, dejected and feeling hopeless.
I was not popular with any of the doctors involved in our daughter's case. They all thought I was being very irresponsible and putting our daughter's health in jeopardy. I still insisted that we needed to solve the constipation problem, but with their help. I promised to work closely with them and to make sure she was monitored regularly. We were advised to try a mild stool softener to start out. I started going in to work late so that I could go for a short walk with our daughter (I thought the mild exercise would be good for digestion), before having breakfast with her (my wife was not well ,and unable to get up early due to chronic fatigue). I also hoped to help her depression by getting her life back to normal as much as possible. She started back in school, and I even took her skiing a few times. I read as much as I could about constipation and digestive problems, and spent many days at the office searching the web for possible causes.
I checked her stools after every bowel movement (she wasn't allowed to flush), and soon determined that the stool softeners didn't seem to be working. Bowel movements were difficult for her, and were often three or four days apart. We tried stronger laxatives. Nothing seemed to improve the situation. Her appetite was still almost non-existent. We continued going for walks before breakfast, but her weight was starting to drop again. We tried just about every laxative, to no avail. She now needed an enema in order to have a bowel movement. We even took her to a naturopath for a colonic cleansing, which wasn't very successful. A subsequent x-ray again showed severe constipation. I began to get very frustrated and worried. Her weight kept dropping and had reached 77 lbs. by the end of January.
American Doctors to the Rescue
I became very concerned about my daughter's condition. I needed to know what to do! I called the pediatrician in charge of our daughter's case, but she refused to return my phone calls (this is common practice in Canada, where many doctors try to make themselves as inaccessible as possible, claiming if they returned every phone call they wouldn't be able to get any (billable) work done). I could make an appointment to see her several weeks down the road. I was angry. What could I do? I got this crazy idea. Why not call some hospitals in the U.S.?
I called Mayo Clinic. I couldn't believe it when they put me through to one of the head doctors in the Gastroenterology Department. He was so helpful, and talked on the phone with me for over half an hour, suggesting what to do and what other tests to have done. Amazed at the helpfulness of this doctor, I thought maybe I would call another hospital. I called University of Illinois Hospital. I was incredulous when I was put through to one of the head physicians in Gastroenterology. He was so helpful. I found the same thing with University of Iowa. One of the head physicians in the GI department there immediately responded to my voicemail, and called me back, offering much helpful advice. I didn't want to take up so much of these busy doctors' time, so each of them was kind enough to give me their e-mail address. None of the doctors in our local area even had an e-mail address.
I corresponded with these physicians by e-mail, and they offered much appreciated advice, for no charge. I was amazed and thankful. They all had a solution for clearing the bowel of stool, which would involve a polyethylene glycol bowel lavage. Taking this laxative was a terrible experience for our daughter, but it worked. An abdominal x-ray the following day showed her bowel to be clear of stool. I was optimistic that now she might get her appetite back. Unfortunately, her appetite did not improve, and her weight dropped even further. Within a few days her constipation returned.
I continued to daily surf the web, and discovered many medical conditions that can cause severe constipation. There were so many possibilites, but how could I find out what it was? Gallbladder disease seemed to fit a lot of her symptoms, so could it be that? Our daughter seemed much too young to have gallstones, but I had heard of teenagers having gallstones. My wife's gallbladder had been full of stones at age 36, and she had to have it removed. Her mother also had died of complications of gallstones, so I knew it was in our family.
On one web search for gallbladder+anorexia, I clicked on a website of a surgeon located in Pennsylvania who stated that many people with eating disorders actually have gallbladder disease. A lot of what he said seemed to fit with our daughter's symptoms. The site also mentioned hypothyroidism being a factor in gallbladder disease. I phoned the number given on the website, to order his book. I was surprised when Dr. Smedley answered. I was so used to first reaching a receptionist who screens calls. We talked for quite a while, and for the first time I knew I was getting very close to finding out the problem.
One of the American physicians from Mayo Clinic had also mentioned that slow bowel motility can be due to hypothyroidism, so I thought maybe our daughter should see an endocrinologist. In Canada, where healthcare is rationed, it can take up to 6 months or more to see a specialist like an endocrinologist. So I again surfed the web, and found the names of a few endocrinologists in Washington State. The first one said he couldn't see us for several weeks, but he gave us the name of another endocrinologist. I phoned his office two days before Valentine's Day, and he said he could make an appointment for us on Valentine's Day . We hopped in the car right after our daughter got home from school, and drove eight hours to his office. He was extremely pleasant, and tested AM cortisol and AM growth hormone.
Unfortunately, he agreed with the original diagnosis of AN, but did suggest a few more tests to do. I asked him about the possibility of gallbladder disease, and he said that may be a possibility since he found she had upper right quandrant pain. The hormone tests came back normal. His assessment stated he didn't have a lot to offer our daughter in the way of solutions, and that he agreed with the original diagnosis of AN.
I called Dr. Smedley again, and he was very helpful. His site suggested the medical tests that should be done, but I couldn't convince the local pediatrician to request these tests. Besides, I could not reach her on the phone, she would not return my calls, and I couldn't make an appointment to see her for several weeks. I considered flying with our daughter to Wilkes Barre to have the tests done there, and since none of the local doctors wanted to call up these tests, I started making arrangements to fly to Pennsylvania.
Ultrasound Shows Gallstones
We were just about to pay for the tickets, when I had an idea. Maybe we could at least get an ultrasound done here to see if she did have gallstones. I phoned the imaging lab in our town, and asked if they had any openings for our daughter, and they said we could come in the next day. I insisted we needed the ultrasound read immediately, and by that afternoon, we had the results. She had 2 mobile calculi (gallstones) measuring 4 to 5 mm (3/16") in diameter in her gallbladder. We finally had a correct diagnosis! I was relieved that now we had found the answer to our daughter's eating difficulties. I was sure now that she could have a gallbladder operation done locally and then she could start her recovery. Her weight had dropped to 73 lbs.
I phoned Doctor Smedley to tell him the news. He wasn't surprised, and advised that she should have her gallbladder removed very soon, otherwise her appetite would not return.
Diagnosis of Anorexia Nervosa Remains Unchanged
Now that the local medical team knew our daughter had gallstones, I thought they would admit that they had misdiagnosed our daughter, and would take immediate steps to address the medical problem. After all, much of the medical literature I had read stated that anorexia, weight loss, and chronic constipation are common presenting symptoms of gallbladder disease.
Unfortunately, none of the doctors involved in our daughter's case thought the gallstones would have anything to do with her anorexia. "We occasionally find gallstones in teenagers, but they've got nothing to with your daughter's problem", said one. "The gallstones are likely from your daughter not eating enough", said another.
I e-mailed the doctors I had been corresponding with in the U.S. to see what they thought."Beware of quick fixes and diseases that may be a consequence of your daughter's condition rather than a cause of it" said one. "She's in no condition to have surgery", said another. "You must follow the advice of your doctor", said another. I was downtrodden and confused.
The pediatrician ordered a HIDA scan (performed in the supine position), which showed a gallbladder ejection fraction of 62%. The report concluded there was no scintigraphic evidence of cholecystitis, although some enterogastric reflux of biliary activity was noted (see page on diagnostic deficiencies).
Our daughter had a painful gallbladder attack one night after a meal and we rushed her to the emergency department. We were confident that maybe now the doctors would be convinced that she needed her gallbladder removed. We told the attending physician that she had been misdiagnosed with Anorexia Nervosa, and that the ultrasound showed gallstones, which were probably causing her weight loss. He did not think the gallstones had anything to do with the eating difficulties, and said "the gallstones are very likely a result of your daughter not eating enough. You have to accept that your daughter has AN and continue working with the eating disorder counsellors".
Our daughter was discharged after a few hours. We went home disappointed and discouraged.
From the reading I had done, I was also aware that other digestive disorders can cause anorexia and weight loss, and that in many people gallstones may be asymptomatic for many years. I insisted that our daughter have a gastroscopy to rule out any ulcers or helicobacter pylori infection, which was agreed to reluctantly. It turned out normal.
Consulting the Eating Disorder Experts
Several months earlier, the pediatrician had booked an appointment for us to see a panel of eating disorder experts at one of Canada's top pediatric hospitals. It was getting close to Easter, and we thought we would take a few extra days to visit family in the area. Our daughter was still eating almost nothing, and her weight had by this time dropped to 70 lbs.
We were impressed that so many experts had gathered to help our daughter. A team consisting of psychologists, psychiatrists, social workers, and a medical doctor made up the team. Two medical students also sat in on the proceedings. Initially, we all sat in a circle and we discussed the situation. I expressed my concerns, stating that many months of pychotherapy had gotten us nowhere, and that we knew our daughter had gallstones. She was experiencing pain and nausea whenever she ate, and her constipation was so bad that she needed an enema to move her bowels. She had upper right quadrant pain. I was confident that they would at the very least focus on this digestive disorder as being a possible cause of the problem.
The eating disorder team had set aside a whole day to get to the bottom of our daughter's eating problem. We were asked to wait in the reception area while the various experts interrogated our daughter. One expert at a time would ask her questions, while the rest of the team sat behind a one-way mirror in a small observation room. I said "I would like to sit in the observation room, so that I can observe what sort of questions are being asked." This was normally not allowed, but I insisted. I had suspected that previous experts must have asked her many leading questions to arrive at their conclusions.
One expert after another talked with our daughter , asking about school, her grandpa's recent passing, her attitudes toward food, her favorite activities, and many other topics. One asked if she used birth control pills, another asked if anyone had touched her inapproriately. Did she think she was fat, or skinny? Did she want to lose weight or gain weight? The physician also did a physical exam, and confirmed she had right upper quadrant pain, and of course that she was severely malnourished.
From Misdiagnosis to No Diagnosis
Toward the end of the day, our family was asked to wait in the reception area while the eating disorder team discussed our daughter's case. After about half an hour, we were called back to go over their findings. "We don't believe your daughter has an eating disorder", said the doctor. "Oh, so then you'll focus on the medical problem, and take out her gallbladder?" I asked. "Well no," said the doctor," that will have to be decided by your local physicians there. The gallbladder may or may not be contributing to the problem. We don't think she has an eating disorder per se, but she does have an eating disturbance."
I wasn't quite sure what he meant by this non-committal diagnosis. I asked if they could do more diagnostic testing, to find out if the gallbladder should come out. I was told that we would have to go back to work with our local physicians. I asked if we could have an entire new medical team put on the case, as I was getting the distinct impression that none of the local doctors wanted to challenge the original diagnosis of AN. We were told that they would look into finding a new medical team for us, perhaps in a nearby city. I was concerned that this would end up being a complicated, timely process, and time was running out for our daughter, whose weight was dangerously low. We left the hospital a little confused, but somewhat optimistic, since we thought the diagnosis had been changed, but we didn't know to what.
I began to get the distinct impression that there was a certain amount of politics involved in the decision-making regarding our daughter's medical care. I knew that all the doctors who had seen our daughter thus far were members of the same medical association, and that this may be a factor in their unwillingness to challenge the original diagnosis. I had witnessed this phenomenon many times in the past with family members who were misdiagnosed, where every effort was made to stick with the first diagnosis, even though very little testing had been done.
We were about to drive back home, when I had an idea. I knew we couldn't expect any help from our local medical team, since they were still stuck on the original diagnosis of AN and were unwilling to even consider that the gallstones were a factor. We needed to make sure that nothing else was wrong, in case the gallstones were asymptomatic. It was the day before Good Friday, and I called the private MRI clinic in the same city. "How soon could my daughter have an abdominal MRI ?" I asked the receptionist. " We have an opening on Easter Monday, if that will work for you" said the receptionist.
The MRI took only a few minutes, and was read later that day as unremarkable. All organs appeared normal, and the gallstones didn't even show up. I was relieved that the MRI didn't show something more serious, although it didn't include her colon, which I thought might be blocked. No colonoscopy had been performed up to this time.
We again considered driving home, but we felt that the situation at home was so hopeless. We decided to stay a little longer, and on on the following day we took our daughter in to the emergency department of the same pediatric hospital, confident they would treat her medical condition. Her pulse was so low that the pulse monitor repeatedly kept sounding an alarm. Her pulse was down to 40 and her blood pressure was frighteningly low. We told the ER doctor that our daughter had gallstones, and we thought that the eating disorder experts in the same hospital had determined she didn't have AN. We were sure they would do all sorts of tests to see if the gallbladder should come out. After spending almost the whole day in the ER, the only test ordered was bloodwork, then our daughter was discharged. The hospital had arranged however, for us to see a pediatrician who was familiar with these cases in the same hospital later that week.
"Your Daughter Has Anorexia Nervosa"
Our appointment with the pediatrician was for 10 a.m., and just as we were about to drive there, his receptionist called to say he couldn't see us until 1 p.m. We relaxed and passed the time visiting with my wife's dad. At about 10:30 a.m., the doctor's office called again to say he could see us at 11 a.m. We rushed down to his office and ended up waiting in the waiting room until almost 1 p.m. before were ushered into his office, where a medical student took our daughter's history. He came into the office shortly thereafter and did a quick physical examination of our daughter. We told him that she had gallstones and that we thought this was the cause of her eating difficulties. We told him she was having classic gallbladder pain, and that the experts at the same hospital had determined she didn't have AN.
He asked our daughter several questions,"what do you have for breakfast?","how much peanut butter do you put on your sandwiches?", "how much supper do you eat?". I told him she wasn't able to eat much because of her gallbladder pain. "Does she sleep through the night?" he asked. "Yes, but she only gets the pain for about 45 minutes to an hour, starting about 15 minutes after meals", I answered. "By the time she's ready for bed, the pain has usually subsided". "Then she doesn't have a gallbladder problem, otherwise she would have terrible pain all night and she wouldn't be able to sleep" he said. "Did she gain weight when she was in the hospital?", he asked. "Yes", I answered. "Well then she doesn't have a digestive disorder", he retorted. "If she had a digestive problem, she wouldn't be able to put on any weight". "But she has classic gallbladder pain, and she's so constipated that she can't even have a normal bowel movement!" I replied. I was becoming agitated. This doctor didn't seem very understanding.
"Your daughter has Anorexia Nervosa, and you have to accept that. You must not believe her when she says she has abdominal pain. These girls want to lose weight so badly that they'll do anything to avoid eating, including going through surgery. If you start pursuing second opinions and looking for a medical diagnosis, months or years of psychotherapy can be wasted!" (I learned later that this same pediatrician had reported us to Social Services claiming our daughter was a protection risk).
"But the panel of top experts we saw here at the eating disorder clinic said she didn't have AN" I said. "I don't care what they said" he retorted, "your daughter has Anorexia Nervosa and you have to accept that and follow the advice of your pediatrician and the psychiatrist." By now my daughter and my wife had burst into tears. I didn't know what to think. "We came here because we thought you could help us. You haven't done any diagnostic testing at all!" We stormed out of his office, my wife and daughter both terribly upset and crying. As we left I said "we will go find someone who is willing to help us!". I knew at this point that we would have to start making plans to fly to Pennsylvania.
One Last Desperate Cry For Help
We drove the five hours back to our home town that same night, and about half way home our daughter started having a gallbladder attack. She began moaning and writhing in pain in the back seat. "We'll stop in the next town and take her to emergency", I told my wife."Surely they'll believe her now that she has gallbladder problems!" We were still about an hour and a half away from the hospital and it was after midnight. By the time we got to the town where the hospital was, her gallbladder pain had subsided. We decided not to stop at the hospital, since we knew they would just send her home anyway.
I thought we had one more option before we would be forced to fly to Pennsylvania. My wife had had gallstones several years earlier, and while she was hospitalized, the surgeons at our local hospital were on strike, and they refused to help my wife. She had to be transferred by ambulance to a neighboring city where a much smaller hospital was still doing surgeries. She had a cholecystectomy there to remove her gallbladder.
I wrote an impassioned letter to the surgeon who had operated on my wife, telling him our desparate situation. Our daughter was nearly dying from malnutrition, and no one would help deal with her medical problem. I knew he understood gallbladder problems, and I was certain he could help us, or at least advise us what we should do. I couriered the letter to his office and anxiously awaited his response. I never heard from him, and he never even acknowledged receiving the letter. I began to realize that no one in B.C. was willing to help us. No one wanted to even entertain the idea that our daughter might not have Anorexia Nervosa, and no one dared to challenge the original diagnosis.
Surgery Scheduled In 9 Days
I called Dr. Smedley on April 4th, to tell him we were having no luck with the doctors in B.C. "Can't you pay a surgeon there to remove her gallbladder?" "No", I replied,"You can't do that in Canada".
"Can't you get a surgeon in Washington State to operate on her?", he asked. "She has gallstones, so any surgeon should gladly help her out." We had been through so many frustrating experiences dealing with new doctors, that I thought we would probably run into the same attitudes in Washington as we had experienced in B.C. I asked Dr. Smedley if he would perform the surgery. "It seems crazy that you have to come all this way just to have her gallbladder removed", he said. "But your daughter needs to have her gallbladder taken out, and very soon. She won't get her appetite back until she does. If no one there will help her, I'll see how soon we can book the OR, and I'll get back to you".
He called back shortly and said she could be scheduled for surgery on Saturday morning, April 13th.
We started making arrangements to fly to Pennsylvania. We didn't know how we were going to pay for the operation and the trip, but that was the least of our worries. We would fly to Hamilton, Ontario on April 9th, then drive the remaining 400 miles through New York State, down to Pennsylvania.
Her weight was still dropping, and had reached 69 lbs. During all this time, however, her energy levels were extremely high, and it was difficult to get her to sit still or keep from getting any exercise. At about this time we learned through the grapevine that the pediatrician we had seen at the large pediatric hospital had reported our family to Social Services, citing our daughter as a protection risk. I was afraid that at any time a social worker might show up at our door with the police to take our daughter from us before she could get the help she needed. This was a constant worry up until we actually had boarded the airplane.
Up to this point I had been a fairly ardent supporter of Universal Medicare, and was proud of the Canadian medical system. But socialized medicine had failed us miserably. I now realized it was a system totally devoid of competition and polluted with politics. I began to recognize the hypocrisy in statements like "no one should be allowed to jump the que just because they have money", or "two-tiered healthcare goes against our Canadian values." My daughter was deathly sick, and I told myself, "what kind of parent would I be if I wasn't prepared to risk everything to save my daughter?"
The Trip To Wilkes Barre
We flew to Hamilton, rented a car, and began the long drive to Wilkes Barre. A short diversion to see Niagra Falls provided a welcome distraction from the stress of the trip. Ironically, my wife had brought along a Karen Carpenter tape, to which we sang along for a good part of the trip. As we listened to her sing those great old songs, I wondered to myself if she had gone through all the struggles my daughter had, and if her illness might also have had a medical explanation.
We stopped for lunch and supper along the way at the fast food restaurants along the toll highway through New York State. Our daughter took one or two bites of her chicken burger, but couldn't finish it. She was still full of relentless energy, but ate almost nothing.
We arrived in Wilkes Barre in the late evening, and checked into the hotel only a few miles from the hospital. The next morning we called Dr. Smedley's office, and arranged to meet with him in the afternoon. He examined our daughter and went over the details of the surgery and what sort of preparation she had to do. We were concerned that her low weight might create complications during surgery, but he assured us everything would be fine. He showed us some before and after photos of other girls who had also been very malnourished before their operations, and who had returned to their normal weight. We felt reassured. We were also impressed with the hospital facilities at Wilkes Barre General. We found out that Dr. Smedley is a very highly experienced, highly respected surgeon there.
The hotel had a swimming pool, and our daughter wanted to go for a swim. I didn't feel comfortable with this, but she had so much energy and wanted to burn some of it off. It was a somewhat bizarre feeling, knowing your daughter is close to death from malnutrition, yet she's bouncing off the walls, full of energy, wanting to run and exercise all the time. I was to learn later the explanation of this strange phenomenon (see Starvation Response).
By the morning of her operation, her weight had dropped to 68 lbs. We arrived at the hospital early in the morning, and the nurse gave her a hospital gown to change into. The anaesthetist arrived shortly thereafter, followed by Dr. Smedley. He reassured our daughter that everything would be just fine, and not long after the anaesthetic was administered, she drifted off to sleep.
My wife and I waited nervously in the hospital lounge for several hours while our daughter was in the OR. Dr. Smedley emerged from the OR and gave us the good news. He had removed her gallbladder laparascopically , and everything had gone very well. The operative cholangiograms had shown no gallstones lodged in the bile ducts. The gallbladder was very large, full of very dark bile, and contained two small cholesterol stones about 3 mm in diameter. Photos taken with the laparoscope showed a very tiny cystic duct with adhesions, which may have been a factor in the development of stones . Thankfully, all other organs appeared normal and healthy. The pathology report would later confirm the diagnosis of cholelithiasis and mild cholecystitis.
As they wheeled our daughter into the recovery room, we each gave her a hug and a kiss. She was in quirte a bit of pain, and needed pain medication every few hours. The first night she was able to sleep almost all through the night. Unfortunately, I didn't fare as well, since the recliner chair I attempted to sleep in was not the most comfortable.
She stayed in the hospital for 2 days after her surgery so they could monitor her condition. The nurses at Wilkes Barre General were fantastic, and our daughter received excellent care. Dr. Smedley came in to check on her several times, and was very reassuring. By Sunday morning she was still only able to sip gingerale. On Monday morning she was allowed to have some soft food for breakfast, but she wasn't very hungry. She was discharged around noon Monday.
By Tuesday she was feeling okay, and I thought I would take her out for supper. My wife was not feeling well, so she stayed and napped in the hotel room. My daughter wanted to go to TGI Friday's, and said she was getting really hungry. She ordered a meal with chicken and vegetables, which looked scrumptious. After only a few bites, however, she could not eat any more, and claimed she felt full and was no longer hungry. My heart sank. I didn't say anything, since I knew that the anaesthetic might be suppressing her appetite. But I was very worried that she might experience complications from malnutrition before her appetite returned.
We stayed two more days in Wilkes Barre and enjoyed an unseasonably warm heat wave, with the temperatures over 90 degress Fahrenheit. We visited Dr. Smedley's office one more time, and on Wednesday morning, began the long drive back to Hamilton, where we would catch the plane back to B.C. Our daughter's weight had dropped to 65 lbs.
Driving back along one of the toll highways in New York State, our daughter started to have a panic attack in the back seat. "I don't feel well at all", she said. "I think I'm dying! I think I'm dying!" She started to hyperventilate and had a very worried look on her face. My wife gave her an Ativan pill, which calmed her down. She started to relax and her breathing returned to normal. We wondered if we should pull off the highway and try to find a hospital, but our daughter said she would be fine, and so we continued driving back to Canada.
On the drive back, she still had little or no appetite. She was only able to eat small snacks. We stopped at a Burger King, since she felt she could easily finish a chicken whopper junior. After two or three bites, however, she said she felt full. I was becoming quite discouraged by this time. Our daughter also was getting worried that she might never get her appetite back.
For supper on Wednesday, she did a little better, and was able to eat half of a chicken wrap, and said she felt pretty good after that. We got up early Thursday morning and she was able to eat a whole bowl of raisin bran, although she said she felt full after only a few spoonfuls. We dropped off the rental car, and checked our bags for the return flight. Our daughter started to look very worried, and said she didn't feel up to flying. As we taxied down the runway, she began to hyperventilate again. She looked very anxious for the whole trip between Hamilton and Thunder Bay.
In Thunder Bay, however, we were able to stop for a snack. She ate a whole sandwich and a bag of potato chips, and a chocolate milk. She said she felt great after that, and perked right up. For most of the flight she was feeling much better and quite optimistic. On the last leg of the flight however, she started to experience pain from her incision, and looked very worried. She said she thought she was going to vomit, so we asked the flight attendant for a cold cloth to put on her forehead. My wife gave her some pain medication, which settled her down a bit.
When we arrived back home, our daughter felt quite discouraged. She would not be able to go back to school for several weeks, since she was in such a fragile state. She also still wouldn't be able to do any of the activities she loved.
We took a walk down to the creek behind our house, where it's peaceful setting and soothing gurglings seemed to calm her fears. We slowly walked back to the house, and I reassured her that everything would work out just fine. Inside I was not so sure.
I was still terribly worried about the prospect of Social Services arriving on our doorstep to take our child from us. And, her appetite was not coming back as quickly as I had hoped! How long would it take?
One thing I was very encouraged by was the fact that our daughter now was able to have normal bowel movements. The constipation had totally resolved. She could not remember ever having such easy bowel movements. We now could be certain that the original constipation problem was due to the gallbladder disease.
By April 20th her appetite was getting much better. She didn't need any pain medication either. For breakfast she was able to eat a large bowl of cereal with milk, yogurt, and juice. She felt pretty good after that. She snacked on ice cream, cookies, and chocolate. Things were starting to look up!
The next few days were very encouraging, as her appetite increased significantly. 2 pieces of french toast topped with frozen yogurt for breakfast., and no pain after eating! Chicken fingers and chips for supper; felt good! Yogurt snack before bed. Our daughter was starting to feel much more optimistic. Her weight was now 67 lbs.
Each day was more encouraging as her appetite increased. By April 24th her weight was up to 70 lbs. (we were using a very accurate digital scale and weighing her always in shorts & t-shirt). April 28th we went out for pizza and she downed 5 pieces!
By May 1st I started to notice our daughter's facial appearance changing from the emaciated "prisoner-of-war camp" look to a healthier, more rounded look. Her face was starting to fill in. I was amazed that this would happen so quickly. She now weighed 72 lbs.
The next few weeks were somewhat discouraging. Her weight actually seemed to drop a bit and remained around 70 lb. for the entire month of May. At times she also seemed to be quite fussy about food. She continued to eat okay, but her appetite wasn't what I was hoping for. I had hoped her weight would continue upward at a steady pace. Dr. Smedley called every couple of weeks to keep tabs on her, and assured us that her weight would eventually go up , but that it may take up to 6 months to return to normal weight.
Learning to Eat Again
I tried to convince her to drink meal replacement drinks like Boost or Ensure, so her weight might go up faster. She absolutely refused, and there was no amount of coaxing or bribing that would make her change her mind about that. I am convinced that the flavours of these drinks bring back vivid memories of the traumatic hospital experiences, much like a post-traumatic stress response.
It also dawned on me that she would have to relearn to eat the foods she used to love as a child. The pain and discomfort she had experienced during her illness, from eating fatty and high-protein foods, had taught her to fear and avoid these foods. Quite often she would refuse to eat this or that food, but after a few bites she found it quite appetizing. I knew that she needed to have several positive experiences with the foods she had learned to fear, in the same way our little Jack Russel terrier gradually forgot it's fear of barking when the batteries on it's shock collar went dead. I also knew that if she had a bad experience after eating, it might revive her fears, in the same way putting new batteries in the shock collar made the dog afraid to bark again.
We had to visit the doctor's office so she could be weighed and her condition monitored. Just a few hours before the appointment though, she said she would not go see the doctor. Having to go to the same doctor's office and be weighed in the same shorts and t-shirt as when she was in the eating disorder program was too much for her to handle. I had to cancel the appointment at the last minute, and told the receptionist that we needed to find a different family doctor. I knew that our daughter needed a physician who had not been involved in her case before, so that we could start with a new slate.
Understanding the role that classical conditioning played in my daughter's eating behavior helped me a great deal during her recovery. Her aversion to many foods was to be expected, and I was confident this aversion would abate as she learned to once again enjoy these foods without pain. This indeed did prove to be the case. I also knew to expect that during stressful periods, these emotional memories might be revived and she might not feel like eating certain foods. This also proved to be the case.
Back to Normal
Over the next few months she gradually began to enjoy a wide variety of foods again. Her appetite kept improving. She experienced occasional constipation, but nothing out of the ordinary. By July 10th she weighed 76 lbs.
By September she weighed 80 lbs. In late September, however, she developed a slight temperature, and seemed to lose a lot of her appetite for about a week. Of course this is normal for most people when they have the flu, but for us it was a bit of a worry. By the end of that week her weight had dropped to 79 lbs.
Come October, she was feeling much better and continued eating well. I noticed that she was starting to look very much like she did before this whole thing started. By October 4th she was 83 lbs. By mid October, 85 lbs. And by Christmas, 2002, her weight was 90 lbs. and she was looking very healthy. By the summer of 2003 she was 100 lbs. and feeling great. We were able to enjoy hiking and backpacking again as a family. I felt assured that she had no lasting complications from her ordeal as I could hardly keep up with her on some backpacking trips.
It was such a pleasure to see our daughter get her life back. Once her appetite returned and she received adequate nourishment, all of her emotional problems resolved. She no longer wants to run everywhere and exercise all the time. She once again enjoys all the activities she used to love before her illness. Her appetite is what you'd expect of a teenager.
Quite often now I look at my daughter and pause to ponder how fortunate we are to have her here still with us. I am so thankful I finally doubted the experts in charge of her care and pursued a medical diagnosis before it was too late. What would have happened if I hadn't located Dr. Smedley? What if Social Services had come and taken our child from us?
I've learned to cherish times spent with my daughter. She is a super kid. Just like any parent, I want her to have a full and rewarding life, and now that she has recovered, she has that opportunity. I am thankful. Now I guess I can concentrate on the normal issues that come with having a teenage daughter, especially now that the boys are starting to notice her.
Having come through this crazy experience taught me a lot about eating disorders and especially about how they are interpreted and treated. I don't believe our case is at all rare. I am certain there are a myriad of cases out there just like ours. Many patients currently in eating disorder programs do not have a psychiatric disorder, but instead are suffering from digestive tract disorders that have resulted in malnutrition. But the odds are stacked against them ever finding out the true problem, due mainly to the beliefs of the very people in charge of their recovery.
W.P. Smedley, M.D. F.A.C.S.
480 Pierce St., Kingston, PA. 18704