The Price of Doubt, Part 2
No one knew why, but by Thanksgiving Ben had physically recovered and was doing better in school. The only class he was struggling in was Geometry, his teacher still not in his corner and a subject that was not one of Ben’s strengths. It was not a good combination. A gray, cold, wet day outside the window probably had a better chance of catching Ben’s interest.
In early December, Dr CCCCC called. Ben had a positive titer for Anaplasmosis, a tick borne infection that was very rare. So rare, that she herself had to study up on it. She couldn’t say with 100% assuredly that it was the cause of his illness, but the symptoms matched and it was the only answer she had. The cure, Doxycycline, was something he had been taking since September for his acne. Looking back, I wonder if Ben’s brain had been affected, possible with this disease and that it was the key to his doing so poorly at school. I mourned for my sweet boy who was looked upon as a failure by some of his teachers and I felt shame for yelling at him for lousy grades, pushing him to get moving when he was sick and hurting, and for the moments of doubt that crept into my mind. I asked her to send all the lab work to Ben’s old pediatrician and I wrote them a letter, hoping they felt my anger with each word. Writing was cathartic and after mailing the letter, I tried to let it go. Ben was well, our lives were busy and full and we needed to get back to the business of living.
RE: Benjamin Wells, 8/27/96
December 8, 2010
Dear Drs XXXXX and YYYYY,
I switched Benjamin’s care to Dr CCCCC in September. After a thorough assessment and lab work, she came up with some interesting results and I have asked her to forward them to you, both for your closure and mine. If you haven’t seen them, I am referring to the positive Anaplasmosis (a tick borne illness) titer found in his blood work.
For your review, I will repeat the symptoms that caused Ben’s Dad and me to seek medical help for our son. He was having headaches, photophobia, visual changes, severe vertigo, chest pain, occasional belly pain, loss of appetite, fatigue and severe muscle, bone and joint pains. He was not having fevers or joint swelling. At one point his weight was down to 108. He currently weighs 124 and is 5’7”. He was sick for over 5 months. That included the entire summer, the fall and of course all of soccer season. He failed three classes this fall secondary to his being ill. An illness you did not believe in.
Dr YYYYY, I found your clinical assessment skills lacking. After two visits, of which you never assessed Ben’s ability to walk greater than ten feet and never spoke to him alone, you deemed him depressed and suggested drugs and alcohol might be the problem. Did you suggest that to the neurologist when you got Ben an appointment at his office, because within ten minutes of meeting Ben, that was his conclusion? He kept him waiting two hours. What teenage boy would not be sullen, especially when he didn’t feel well? Ben overheard you discussing drugs and alcohol with us and subsequently refused to take even an Advil for his pain. He rated the pain in his legs a seven or eight out of ten.
Dr XXXXX, I am so disappointed in you. You have been part of our lives for over twenty years and yet you didn’t return my phone calls. Ben had the summer from hell and you weren’t there for him. If you have lost the ability to care, then it may be time to retire.
I don’t know what happened medically to Ben and neither do you. I am not writing this letter to be spiteful, but in hopes that you both take an honest look back at what happened. Please reevaluate what transpired and honestly consider what you could have done better. Don’t do it for Ben, because it’s too late, we have moved on, but for the next kid who comes in. I appreciate your time and allowing me this closure.
Sincerely,
Anne E. Lawton
Cc Dr CCCCC, AMC Pediatrics and William Wells
I never got a response to my letter. I knew I wouldn’t, history alone provided all the proof I needed that Ben was not on their radar. This is the part where I wish I could say we were able to move past it and go forward, but we’ve struggled. I am angry at the situation, at the physicians, and with myself. I keep thinking that I should have done more, but I had my doubts as well. There were days that I yelled “BUCK UP, it can’t be that bad!” But then I remember the days he hurt too much to get out of bed, or the days he would fall because he was dizzy. An athlete who just wanted to play soccer all summer and make the JV team in the fall, but couldn’t, and a new unforgiving school that he got lost in. He was an innocent boy who got sick and no one believed him, sometimes even me. It hurts in a spot that I can’t describe or locate, to admit that I also failed him. I’m afraid to talk to him about that period of time, afraid of what he might have to say. It’s easier to believe that he’s ok with everything; that if I feed him, he’ll be happy, and that a soccer ball at his feet is the key to Ben’s mental health. If only life were that simple and doubting a child was not something that collected a fee later in life.
In early December, Dr CCCCC called. Ben had a positive titer for Anaplasmosis, a tick borne infection that was very rare. So rare, that she herself had to study up on it. She couldn’t say with 100% assuredly that it was the cause of his illness, but the symptoms matched and it was the only answer she had. The cure, Doxycycline, was something he had been taking since September for his acne. Looking back, I wonder if Ben’s brain had been affected, possible with this disease and that it was the key to his doing so poorly at school. I mourned for my sweet boy who was looked upon as a failure by some of his teachers and I felt shame for yelling at him for lousy grades, pushing him to get moving when he was sick and hurting, and for the moments of doubt that crept into my mind. I asked her to send all the lab work to Ben’s old pediatrician and I wrote them a letter, hoping they felt my anger with each word. Writing was cathartic and after mailing the letter, I tried to let it go. Ben was well, our lives were busy and full and we needed to get back to the business of living.
RE: Benjamin Wells, 8/27/96
December 8, 2010
Dear Drs XXXXX and YYYYY,
I switched Benjamin’s care to Dr CCCCC in September. After a thorough assessment and lab work, she came up with some interesting results and I have asked her to forward them to you, both for your closure and mine. If you haven’t seen them, I am referring to the positive Anaplasmosis (a tick borne illness) titer found in his blood work.
For your review, I will repeat the symptoms that caused Ben’s Dad and me to seek medical help for our son. He was having headaches, photophobia, visual changes, severe vertigo, chest pain, occasional belly pain, loss of appetite, fatigue and severe muscle, bone and joint pains. He was not having fevers or joint swelling. At one point his weight was down to 108. He currently weighs 124 and is 5’7”. He was sick for over 5 months. That included the entire summer, the fall and of course all of soccer season. He failed three classes this fall secondary to his being ill. An illness you did not believe in.
Dr YYYYY, I found your clinical assessment skills lacking. After two visits, of which you never assessed Ben’s ability to walk greater than ten feet and never spoke to him alone, you deemed him depressed and suggested drugs and alcohol might be the problem. Did you suggest that to the neurologist when you got Ben an appointment at his office, because within ten minutes of meeting Ben, that was his conclusion? He kept him waiting two hours. What teenage boy would not be sullen, especially when he didn’t feel well? Ben overheard you discussing drugs and alcohol with us and subsequently refused to take even an Advil for his pain. He rated the pain in his legs a seven or eight out of ten.
Dr XXXXX, I am so disappointed in you. You have been part of our lives for over twenty years and yet you didn’t return my phone calls. Ben had the summer from hell and you weren’t there for him. If you have lost the ability to care, then it may be time to retire.
I don’t know what happened medically to Ben and neither do you. I am not writing this letter to be spiteful, but in hopes that you both take an honest look back at what happened. Please reevaluate what transpired and honestly consider what you could have done better. Don’t do it for Ben, because it’s too late, we have moved on, but for the next kid who comes in. I appreciate your time and allowing me this closure.
Sincerely,
Anne E. Lawton
Cc Dr CCCCC, AMC Pediatrics and William Wells
I never got a response to my letter. I knew I wouldn’t, history alone provided all the proof I needed that Ben was not on their radar. This is the part where I wish I could say we were able to move past it and go forward, but we’ve struggled. I am angry at the situation, at the physicians, and with myself. I keep thinking that I should have done more, but I had my doubts as well. There were days that I yelled “BUCK UP, it can’t be that bad!” But then I remember the days he hurt too much to get out of bed, or the days he would fall because he was dizzy. An athlete who just wanted to play soccer all summer and make the JV team in the fall, but couldn’t, and a new unforgiving school that he got lost in. He was an innocent boy who got sick and no one believed him, sometimes even me. It hurts in a spot that I can’t describe or locate, to admit that I also failed him. I’m afraid to talk to him about that period of time, afraid of what he might have to say. It’s easier to believe that he’s ok with everything; that if I feed him, he’ll be happy, and that a soccer ball at his feet is the key to Ben’s mental health. If only life were that simple and doubting a child was not something that collected a fee later in life.
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