I saw a news story today about a little boy who couldn't sleep. The 3-year-old literally was awake nearly 24 hours a day, for years. The poor kid couldn't function on a normal level due to his extreme sleep deprivation and the parents were exhausted and at their wits' end. They went to doctor after doctor. He had his tonsils taken out, tubes put in his ears, and was put on anti-psychotic medications, but nothing worked.
Finally, a doctor correctly diagnosed his condition, and after having surgery on his skull to relieve pressure on his brain, he is finally able to sleep, and is now a normal child. I was touched by the parents talking about what a joy it is to be able to just hug and kiss their child.
Watching the parents in the interview, I completely understood. Luckily, our experience wasn't as extreme, but I was able to thoroughly empathise; their lack of sleep, the frustration at trying to find out what's wrong, the relief and enjoyment and thankfulness of having a normal child. I so understand.
At the end, the reporter notes the mother said to never give up when symptoms are unexplained; keep questioning the doctors, getting new opinions, asking questions. I found myself nodding in agreement. Right on, sister!
One of Luke's symptoms, besides his behavioral issues, was persistent headaches and stomachaches, from the time he was old enough to verbalize how he felt. Almost every night he would complain that his stomach and head hurt. What a feeling of helplessness, to have your child feel so miserable and not be able to do anything about it! In retrospect, I wonder if he was not having those symptoms during the day, too?
(I would like to take a moment here to say this is not about doctor-bashing. I love our pediatrician. A lovely, warm woman, she interacts wonderfully with Luke and is thorough and concerned and helpful. I've always appreciated that she listens closely to me without interrupting or dismissing what I relate to her, and she's been very open-minded and supportive about Luke's food allergies.)
On one visit when I described Luke's symptoms, our pediatrician explained persistent headaches and stomach aches happen frequently in children and we don't always know what causes them. She thought perhaps he had a virus that caused the physical symptoms and he was acting out because he didn't feel well. A strep test came back negative.
On another visit, a different pediatrician suggested Seasonal Affective Disorder. A third, despite my assertion that Lukas was normally good-natured, suggested that perhaps he had an "oppositional personality" and that we should try a pediatric psychologist. That one made me angry--I knew this behavior wasn't his personality and I felt what I said had been dismissed.
Symptoms like that--persistent headaches, chronic stomach aches--deserve real, sustained attention instead of a snap diagnosis, as do parents' gut feelings about their child's health. When you feel something isn't right with your child, don't give up. Keep trying.
If we had simply accepted what the doctors said, if I had not persisted in believing there was something physically wrong with Luke, if I hadn't kept asking questions and taking him to the doctor, and doing Internet research, I can only imagine where he'd be today. Probably labeled as ADHD and oppositional and special needs. The loss of his potential would have been so sad. I worry a lot about how other kids might be going through the same thing. I hope, too, that doctors are more aware that chronic stomach and headaches can be an indicator of food allergies.
This is not to say that you should ignore what doctors tell you. But in the end, we are ultimately responsible for understanding our bodies and our medical care, and that of our children. With the Internet, we have more information at the tips of our fingers than ever before.
Don't give up!
"Never give up. And never, under any circumstances, face the facts." --Ruth Gordon
Posts
No comments:
Post a Comment