"He's Our Kid Again. He's Eric Again."
March 11, 2011
As a parent, you never want to be told that your child is sick. But when you know that your child is sick, you at least want him to have a diagnosis that is treatable and – maybe just as importantly – understandable. I can tell you from firsthand experience that functional abdominal pain (FAP) isn't a diagnosis that I liked hearing at the beginning.
It all started when my son, Eric, had his gallbladder removed when he was 12. He had been fine up until then. Actually, he had been more than fine. He was active and happy and involved. He never missed a day of school.
That's why it was especially troubling when his stomach didn't quit hurting after his gallbladder removal. The pain made him a different person. He was anxious and withdrawn. My son, who was always up for anything, didn't want to leave the house anymore.
We took him to every doctor who we thought could help him. And none of them could figure out why he was feeling so badly. One gastroenterologist suggested that he might have FAP, but I felt like he was just giving us a throw-away diagnosis. Since he couldn't find a cause, I thought he was just telling us that to blow us off.
It sounded like he was basically telling me that my son's pain was just in his head, but I could see that it was real. Eric nearly passed out from stomach pain at a UIL band competition. He loves band; so, I knew that he wouldn't fake being sick to get out of it. It got so bad that he had to become a homebound student. He couldn't even make it to school anymore. In the next few months, he lost 20 pounds. He was skeletal thin.
There was nothing fake about that. We took him to more doctors, and still none could help. Our pediatrician was sympathetic, but realized this was not his area of expertise. He's the one who referred us to Children's.
FAP is a 'vicious cycle'
We met with Dr. Meg Sathe, a gastroenterologist, when we first came to Children's. After reviewing Eric's records and history, she also came to the conclusion that he had FAP — but she explained it to us in a way that made it sound like a real diagnosis.
She told us that FAP is a condition where your nervous system is cranked on high so that you feel extreme pain when other people might just think, 'Oh, my stomach kind of hurts today.'
We learned that FAP causes real physical pain but has a huge psychological component. The problem is that the more worried you get about the pain, or throwing up or having diarrhea, the worse the pain and symptoms get.
It's a vicious cycle. You're nervous because you think your stomach's going to hurt. Then your stomach hurts because you're nervous. And it just goes around and around.
Dr. Sathe let us know that a lot of kids get FAP for two or three weeks around the beginning of school every year. She explained that the way some kids might get a migraine if they're nervous is the same as a kid getting nervous and developing FAP. Eric just had a severe case.
But she didn't tell us that he would get better and send us home. She prescribed medication for Eric that would help him handle the pain.
Then she looked at him in the eye and said, "We're going to get you out of this pain."
The psychological side of FAP
Since part of FAP is psychological, Dr. Sathe had Eric meet with Dr. Gabby Reed, a psychologist who works with gastroenterological patients. Eric saw her regularly for about a year and a half. She was amazing. She gave him the mental tools to handle his condition.
Eric would think he was just talking to her, and she would steer him down a path of what she wanted him to talk about. They would role play and brainstorm. She had him try to see his situation as a video game with pain winning every time he didn't go somewhere or do something he liked. So, he had to be the hero and fight it and get mad and decide to get his life back.
You could see that she really cared about Eric, but she also encouraged me to show some tough love.
Part of that was not making it fun and easy for Eric to stay home when he was in pain. What 14-year-old isn't going to want to stay home and play video games all day instead of doing chores or going to school? So, I got to a point where I started telling him, "If you're going to be home sick, you need to be in bed or doing homework."
I can't say enough about Dr. Reed. I know we wouldn't have gotten through this without her care. The same is true about Dr. Sathe. To say they saved his life might be a little dramatic, but I don't think it's too dramatic because we were just losing him — who he was.
Back to normal
Last year, Eric had a breakthrough. It just clicked one day with Dr. Reed, and he was able to return to school in January, 2010. Now he's in high school and is just like a normal kid.
He's back in band. He goes to the rec center and plays football and basketball. He's our kid again. He's Eric again.
He really doesn't get nervous any more. I was concerned with him switching from middle school to high school, but he didn't have any problems with it. The cycle had been broken, and he was fine.
He still has occasional stomach pain but nothing serious. He doesn't want to get off of his medication, though, and Dr. Sathe said that he could stay on it as long as he feels like he needs it. She has had kids stay on it long-term without any side effects. I can respect that it's really his decision.
I think that's one of the things Dr. Sathe and Dr. Reed have done a really good job at — they've made him feel empowered. The other gastroenterologist that we saw did a great job of diagnosing him, but then he basically told us, "I'm done with you. I can't help you." But Dr. Sathe looked at Eric and said, "We can beat this. We will get you out of pain."
We credit Dr. Reed and Dr. Sathe a lot. But I also have to give a lot of credit to Eric. He had to go through a lot and put in a lot of hard work. He had to do things that were very uncomfortable for him. And at the end, he became himself again.