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The 18-month headache

3 Aug


Last Updated July 30, 2007

In March 2006, Jai Kawale, 9, of Toronto came down with a flu bug. He had a high fever, stomach upset and a headache. The first two symptoms disappeared within days, but the headache remained — for the next year and a half. His mother Priti remembers, “It was pretty severe. He was out of school and just sat there all day holding his head.”

Priti Kawale tried a variety of different pain medications but nothing worked. So she took Jai to doctors. They gave him a CT scan and an MRI but both uncovered nothing abnormal. Doctors then administered blood tests but again turned up no allergies or parasites. Next Kawale took her son to a chiropractor, tried homeopathy, even purchased orthotics, but the headache remained. She removed different foods from his diet to see if they were the cause (they weren’t) and tried craniosacral therapy. Nothing worked. Because Jai was having trouble sleeping from the painful headache, doctors gave him the anti-depressant Amitriptyline. It relieved the pain enough for him to sleep, but the headache is always there.

The illness has been dubbed “new daily persistent headache,” but little is known about it. Toronto pediatrician and headache specialist, Dr. Gerald Friedman, explains it’s one of a group of chronic daily headaches and affects four per cent of adults and one per cent of children. “It was only even recognized in the late ’80s. It begins abruptly, lasts every single day for at least 90 days. You can imagine the type of despair someone who has never had headaches all of a sudden experiences. A child shows up with these headaches with very abrupt onset, and they are very disabling on a daily basis. After we’ve done blood work, X-rays, MRI and a spinal tap, we look at this type of headache.”

While the headache has a name, no one knows the cause or cure. Dr. Friedman says a third of patients have been infected with Epstein Barr or some type of virus which may provide a possible link. Stephen Brown, director of chronic pain at Toronto’s Hospital for Sick Children, says, “We’ve seen a number of kids after an infection, but we don’t really know the cause. I suspect stress plays a role.”

Mentioning stress is something that makes parents of these children furious. Kawale says, “People think these headaches are stress related or psychosomatic. The last thing the kid wants is to have a headache. He wants to get on with his life. He loves being with his friends and doing everything as normally as possible.”

Dr. Friedman agrees. “Kids with stress headaches get breaks in between. They get better on the weekends and after school. These kids show up on your doorstep on Christmas Day when everything should be calm. They are high-functioning children whose lives have become totally changed because of this. They may be stressed, but that’s because all of a sudden they’re not able to perform. They’re normal, healthy, active, sports-minded children who are suddenly disabled.”

Treatment success elusive

Doctors use three types of treatment for the headaches, but with limited success. First there are over-the-counter medications, which do little, according to parents. Then there are antidepressants and anti-convulsants, which have limited success. Stronger medications are thought to cause rebound headaches and migraine medications don’t work. Dr. Brown says the most effective treatment is cognitive behavioural therapy with a therapist who specializes in chronic pain in children. As well, doctors encourage regular sleep patterns and exercise.

Debra Satok, whose 13-year-old son has had a headache for six months, even tried Botox, which has been successful in some migraine sufferers. “I understand what the illness is now, and it took giving him Botox to see it. It’s not a pain in his forehead, but it’s a pain syndrome. It’s a misinterpretation of pain by the brain.”

Right now, the American Headache Society is conducting a study of chronic daily headaches — what they are, who gets them and the best treatment. Satok says, “Thinking outside the box is what’s going to cure this.”

Until that cure comes, parents are just trying to keep themselves and their kids going. What’s especially daunting is parents have been told the headaches can last from two to five years. As well, doctors haven’t been able to point them in the direction of a child who is now rid of the headaches.

Linda Lester, whose son, Jonathan, 9, has had a headache since the spring, is trying to be optimistic. “I keep saying it’s not life-threatening. He’s able to sleep again and that’s good.”

Satok agrees. “I’m trying to focus now on being normal — maybe this is the new normal.”

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