ADHD misdiagnosis: Tonsil removal may 'cure' ADHD behavior in kids

What really seems to be happening is the ADD/ADHD is being misdiagnosed in cases where there is medical problem involving the tonsils. The condition causes lack of sleep, a low grade infection etc. which in turn causes the kid to 'act up' and this in turn earns the kid an ADHD diagnosis. Which is never really cured because the original medical condition is never addressed and the kid never really had ADHD.

As seen in this Report, with additional links to research items here and here. via Furious Seasons weblog

Extremely hyperactive, the toddler ran around in circles, destroying everything in his path. He choked the cat and dragged it by its tail. He bit the teacher and hit other kids. He got kicked out of day care and banned from friends' homes.

His own grandmother called the 2-year-old a "monster." Friends told his family that T.J. — short for Terence Johnson — was destined to be "the next serial killer."

"He was so out of control, I was at my wits' end," said his mother, Heather Norton. "It is hurtful to realize nobody likes your child. Even my family didn't want him to come to events or reunions. Everyone kept telling me he's got to get help."

That was then.

Today, as T.J. gets ready to turn 3, he is a changed boy. Lively, to be sure, but affectionate instead of mean and aggressive. He's allowed back into friends' homes. There are no more frantic calls to pick him up at day care. The cat has relaxed.

"It's a total turnaround — this is a different child," his mother said. "He's a normal, active toddler now. He responds to punishment for the first time. He gives us hugs. He says, 'I love you.' He's learning to share. Everybody notices the difference."

A frontal lobotomy? Electroshock therapy? Powerful drugs? No.

T.J. had his tonsils out.

As medical studies are beginning to confirm, the removal of a child's tonsils can, in some cases, significantly improve, even cure, severe hyperactivity often diagnosed as attention deficit hyperactivity disorder, or ADHD.

Now affecting more than 2 million U.S. children, ADHD most often is treated with controversial psychoactive drugs, sometimes taken for a lifetime.

But in a significant number of these children — as many as half of those with an ADHD diagnosis, in one study — simply removing the tonsils also has removed the diagnosis, by restoring normal behavior.

"Sometimes you get really great results, sometimes you see partial results in these children," said Dr. Damian Parkinson, a psychiatrist who has been working with T.J. at Pantano Behavioral Services. Parkinson was the first to suggest T.J.'s terrible behavior might be related to his tonsils.

The key to making that connection is how the child sleeps. Snoring, restlessness, apnea, and gasping for breath during the night are clearly linked to hyperactive daytime behavior in very young children. And enlarged or infected tonsils and adenoids — immune-related tissue masses in the back and upper throat — most often are the cause of what's known as "sleep-disordered breathing."

"What I look for is the child who comes in with typical ADHD symptoms — he's hyper, not listening, acting impulsively, hitting other kids — but who also has trouble sleeping," Parkinson said. "If the parents notice, and the child is congested and breathing through the mouth, that makes me wonder if the tonsils are the source of the whole problem."

That's pretty much the story of T.J.'s young life.

"He never slept through the night, since he was a baby," his mother said. Once he was walking, he'd get up and wander through the house, even into the street, in the middle of the night, forcing his parents to lock him in his room at night, for his own safety.

Always, T.J. snored — so loudly his older brother had to move out of his room — and had a chronically runny nose. But never in her wildest dreams did his mother think any of this was linked to T.J.'s behavior.

"He would snore, and choke, and wake himself up," she said. "But I thought it was normal. His dad snores."

Unlike older children and adults, this lack of restful sleep — and resulting oxygen deprivation — does not produce daytime sleepiness and fatigue in very young kids. It tends to make them hyper.

"Chronic loss of sleep can drive kids crazy, and the less sleep they get, the more crazy they get," said Dr. Brice Kopas, T.J.'s
pediatrician. "T.J. was impossible. He just could not sit still, for even a second or two."

But what has been less clear, until recently, is the direct effect of tonsil and adenoid removal on easing, even eliminating, full-fledged ADHD, in children who have sleep problems.

In one recent study, at the University of Michigan, 22 children with ADHD and sleep-disordered breathing had adenotonsillectomies. After one year, 11 no longer battled ADHD.

"These improvements are remarkable because hyperactivity and inattention generally are expected to be chronic features in affected school-age children," the researchers wrote in a report published last year in the journal Pediatrics.

As a result of this and other recent studies, "doctors conducting healthy-child checkups should always ask about snoring, poor sleep, behavioral and learning problems, and look for physical signs such as enlarged tonsils and adenoids," reads a summary of the issue published in the Journal of the American Medical Association in June.

And if all those signs converge, surgery is really the only option, said Dr. Sanford Newmark, a Tucson pediatrician who practices integrative medicine, using both mainstream and alternative therapies.

"There really is no other way to deal with it. The tonsils and adenoids are what obstruct the upper airway when a child lies down to sleep, so you have to get them out if that is happening."

But he doubts most busy doctors today are up to speed on this childhood medical issue.

"They have too little time with patients. I think many doctors miss it," he said. "Sleep problems are really underdiagnosed today, at all ages."

But missing this in young children can mean profound, even life-threatening effects — including heart and lung damage, and permanent cognitive deficits — if disrupted sleep persists for five years or longer.

"That's what clinched it for us. As soon as we heard that, we knew we wanted the surgery for T.J.," Norton said.
And so, the "little tyrant," as he was sometimes known, had his tonsils and adenoids out in April at University Medical Center. His surgeon, Dr. David Parry — Tucson's only pediatric ear, nose and throat specialist — had found them "grossly enlarged."

Tonsils and adenoids swell when they mount an immune response to fight germs.

"Once that is done, they should go back to normal size, but in some kids they don't," Parry said. "That may be the result of a chronic low-grade infection that goes undetected."

The surgery was painful for such a young boy, and T.J. remained at UMC for two nights. But the positive effects showed up almost immediately, his mother said.

"Right away, he started sleeping through the night, for the first time in his life. No snoring, no gurgling, no sleeping all over the bed," she said.

"When his behavior changed, we just didn't believe it at first. We thought it had to be the pain medicine. But it's four months later now.

"He's a normal child."