The following accounts are true stories, although the names have been changed to protect the people involved. If you have heard of more cases of misdiagnosis, please contact us! Your input is vital to exposing the truth about Anorexia Nervosa.
Case #1 :
Original Diagnosis: Eating Disorder Not Otherwise Specified
Correct Diagnosis: Crohn's Disease
David's mother writes:
Our son David was not directly diagnosed with Anorexia Nervosa, but we were told he definitely had an eating disorder of some kind. The only reason they told us it was not anorexia was because he did not believe he was fat, and in fact told every health professional that he knew he was too thin.
As his parents, both my husband and I were very confused. David had been a picky eater most of his life, and we had taken him to the doctor on numerous occasions, frustrated with his lack of appetite and failure to thrive. We not only consulted our GP but also spoke to dieticians and other parents. Everyone reassured us that all kids are picky and that he would snap out of it. By late summer of 1999 David was eating less and less. He was 12 years old. He had not grown or gained any weight for almost a year. By Halloween we knew there was something seriously wrong because he would not touch his Halloween candy at all.
He complained of always feeling full and just not feeling hungry. We always tried to encourage him to eat at least something each meal. It would lead to conflict. He would complain of stomach aches. By November our GP told us he had an eating disorder. No bloodwork, no tests.
We were instructed not to try to make him eat, but that David himself would take full responsibility of his food intake, he was old enough. At this point David was well behind in his growth pattern and maturity level. He ate nothing and lost weight.
He had bloodwork done, and was admitted to the hospital in early December under the care of a pediatrician. His bloodwork was abnormal, but this was attributed to an eating disorder. He had an abdominal ultrasound done and this was normal. Stool samples were requested to test for occult (hidden) blood, but David refused to comply, and it was never pursued any further than that.
He was in hospital for three weeks. He made no progress, was homesick and wanted to come home. He started to complain of more and more stomach aches and nausea. He vomited after meals. We were told he was manipulative. He had anxieties about food. He was started on Ativan, an anti-anxiety drug.
Neither my husband nor I could understand the person that David was becoming. We wanted to take him home. The psychiatrist hardly ever came to see him. On New Years Eve we decided to take David home and insisted he be discharged. The psychiatrist reluctantly agreed. He had spent three weeks in the hospital.
At home we followed the strict dietary guidelines and tried to make him eat. We were very confused but were told that we as parents we were too uptight. David was too manipulative, we were weak. We doubted ourselves as parents and believed the health professionals.
By January, David was complaining more and more of pain and nausea. The pediatrician who followed him referred us to a pediatric psychiatrist in another town who prescribed anti-depressants. Nothing worked and David was now showing behavioral problems. He was extremely frustrated and irritable.
No one believed him when he complained of abdominal pain. He was very sick. He was almost 13 and weighed 66 lbs.
He was admitted to another hospital under the care of a different psychiatrist. Because he was too young to be on the psych ward he was admitted to the pediatric ward, and that was our saving grace. He needed to be under the care of a pediatrician to be on that ward. The pediatrician there suspected right away that David did not have an eating disorder.
His bloodwork was abnormal but not in keeping with an eating disorder. His ESR was extremely high ( had been all along in the first hospital too) which is a sign of inflammatory disease. This pediatrician phoned a larger hospital to check if this finding had ever been seen in kids with AN. The answer of course was NO. Stool samples were obtained, and they did not take no for an answer this time. David had to comply. Of course they were all positive for blood.
During his hospital stay in this second hospital, he vomited daily. His symptoms got worse. More tests were ordered, including an abdominal ultrasound. The reason for the ultrasound was because they suspected Crohn's disease. So in this case they paid special attention to the terminal ileum ( last part of the small bowel) which is where Crohn's often first starts.
The ultrasound was highly suspicious of Crohn's Disease. He also had a Barium study, same results. Usually with an abdominal ultrasound they scan all the abdominal organs. I can't believe that the ultrasound at the first hospital was normal. I have two theories about this. Either they scanned all the organs but not the bowel, or they misinterpreted the results (see page on diagnostic deficiencies). He spent two weeks in the second hospital.
More tests needed to be done at a larger pediatric hospital in another town. There he had a colonoscopy, which clearly showed severe Crohn's disease. His bowel was so inflamed that it was almost completely blocked, hence the vomiting. The gastroenterologist at the pediatric hospital speculated that David likely had had Crohn's for as long a four years or more. Just a gradual increase in inflammation.
He spent three weeks at the pediatric hospital. He was put on a special tube feeding which provides the bowel with rest. He gained two to three pounds a week. He was not allowed to eat for 6 weeks. He was started on the right medication and felt hungry for the first time in years.
He was tube fed at home. When we slowly introduced foods again after 6 weeks he again got the same symptoms. He eventually had further tests which showed that due to prolonged and untreated inflammation he had developed severe scarring of the bowel and the damage was irreversible.
He ended up having surgery in August 2000 to have a large portion of his bowel removed. He was tube fed for well over a year and gained 40 lbs. He did not eat solid food for almost 18 months. He continues to be an extremely picky eater, still never has much of an appetite. But he is of average height and slightly under average weight. He seems to have taken things really well, never seemed angry at all.
My husband and I had a very hard time coming to terms with all that had happened, especially the fact that we forced him to eat and did not believe him but believed the health professionals.
Well thank you for listening to my story. I worry to this day about the effects this misdiagnosis had on David. I know it will hurt me for the rest of my life.
Author's Note: It is apparent in this case the unwillingness to perform appropriate diagnostic testing played a key role in the original misdiagnosis. Perhaps the original attending physician thought they were doing their duty by saving the insurer the cost of these expensive tests. Another major factor at play was the assumption by almost every health professional involved that the eating disorder had purely psychiatric causes. It was very lucky for this young man that he was eventually cared for by a physician who doubted the original diagnosis and was not afraid to challenge it. 2-1/2 years after his surgery, David continues to have difficulty eating, and suffers from recurring symptoms of Crohn's disease.
Check this page regularly for more misdiagnosis cases, as more will be added as readers write in with their stories. There are bound to be many!