"My first reaction was, are you serious? If you listed all the possible causes for Will's knee swelling and pain, Lyme Disease would be at the bottom of my list. After all, we had never seen a bulls-eye rash or a tick.
How wrong I was. Will's tests came back positive. We consulted next with an infectious disease specialist who put our son on a three-week course of antibiotics.
Still, no reason to panic, I thought. I knew that Lyme Disease was notoriously difficult to detect, but now that we had a solid diagnosis, the antibiotics should clear everything up.
I was only half right. My son felt better once he began taking the antibiotics, but when he finished the prescribed three week course, his symptoms flared up again. He experienced joint pain, headaches, dizziness, brain fog, and fatigue. He had trouble falling asleep at night and waking up in the morning. Usually a relaxed, confident kid, Will experienced mood swings and seemed emotionally fragile."
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For many of us, the arrival of spring has come none too soon. The trees and flowers are blossoming in their springtime finery, and the air is filled with chirping birds and floating butterflies. But as we gather our families for hikes through the woods and picnics in the park, it's important to take a few precautions, now that the warm weather has attracted an uninvited guest -- ticks carrying diseases that can make our children very sick.
Four years ago, my older son Will, then 10-years-old, rolled out of bed one morning limping and complaining of painful, swollen knees. He had just played his first basketball game of the season the night before, so I figured his discomfort was merely a product of too much time pounding the hardwood.
Still, better to be safe than sorry, so we consulted our orthopedist the next day. Upon just a cursory exam, the doctor said Will's knees felt "hot," suspected an infection, and wanted him tested immediately for Lyme Disease.
My first reaction was, are you serious? If you listed all the possible causes for Will's knee swelling and pain, Lyme Disease would be at the bottom of my list. After all, we had never seen a bulls-eye rash or a tick.
How wrong I was. Will's tests came back positive. We consulted next with an infectious disease specialist who put our son on a three-week course of antibiotics.
Still, no reason to panic, I thought. I knew that Lyme Disease was notoriously difficult to detect, but now that we had a solid diagnosis, the antibiotics should clear everything up.
I was only half right. My son felt better once he began taking the antibiotics, but when he finished the prescribed three week course, his symptoms flared up again. He experienced joint pain, headaches, dizziness, brain fog, and fatigue. He had trouble falling asleep at night and waking up in the morning. Usually a relaxed, confident kid, Will experienced mood swings and seemed emotionally fragile.
My wife and I realized that the standard treatment wasn't working. We took Will to see a "Lyme literate" doctor who specialized in the treatment of chronic or difficult cases. Our doctor concluded that Will's Lyme Disease was more advanced than we thought, and he started Will on a longer course of treatment with a new round of antibiotics.
During Will's treatment, we learned as much as we could about Lyme Disease. We met other parents of children suffering from Lyme, who gave us valuable guidance and support. We sought the advice of advocacy and outreach groups such as the National Capital Lyme and Tick-Borne Disease Foundation (NatCapLyme) and the Children's Lyme Disease Network (CLDN), and learned things about this terrible disease we wish we'd known before. For example,
• Lyme Disease is one of the most potentially dangerous infections for children. According to theCDC, children between the ages of five and nine are at the highest risk of becoming infected.
• Lyme infections are skyrocketing. Lyme Disease has been found in every state in the U.S. The CDC recorded approximately 33,000 confirmed and probable cases in 2011, but acknowledged that the actual number of cases might be grossly underreported.
• Victims might never see a tick attachment or a rash.
• As difficult as it is to see an adult tick, nymphs -- which are immature adults that can also transmit disease -- are even smaller and harder to find, about the size of a poppy seed.
• Lyme Disease is caused by a bacteria contained in the tick's saliva, which can be spread within hours of attachment.
• Lyme Disease isn't the only microbe carried by ticks. Ticks can spread other diseases with such strange sounding names as Bartonellosis, Babesiosis, Ehrlichiosis, and Anaplasmosis. In addition to Lyme, doctors must detect and treat these other "co-infections."
• Lyme Disease can be hard to diagnose and can masquerade as other illnesses. There is also no conclusive test for determining when a patient's Lyme infection is cured.
My family had embarked on what fellow parents of children with Lyme Disease simply call, "The Journey." During this journey to find a cure, parents must cope with the difficulties of getting a proper diagnosis and treatment for their children. I discovered that:
• Doctors who specialize in treating Lyme are at a premium, and it's sometimes only possible to schedule appointments several months in advance, if at all. Some families have to travel long distances, even cross country, to see an experienced doctor.
• There is a controversy within the medical community about the proper way to treat Lyme Disease. Some doctors believe there's no convincing evidence for the existence of chronic Lyme infection and feel long-term antibiotic treatment is unproven and risky. Other doctors argue that current Lyme testing is largely inaccurate and likely to miss patients with chronic and ongoing infection, and that long-term antibiotic treatment is necessary. Parents need to learn about this controversy as it may determine their selection of doctors and course of treatment.
• Depending on the treatment, insurance may, or may not, pay all medical bills. Not only will parents have to learn about the medical nuances of diagnosis and treatment, but they'll have to master the intricacies of submitting and coding insurance claims.
• While the medical community has made great strides in treating Lyme sufferers and research is advancing toward creating a preventive vaccine, the success in treating long-suffering patients is mixed at best.
Fortunately for my son, his long-term antibiotic treatment seems to have worked. Will has been symptom-free for over two years, and for that we are truly grateful. But I know that my family was extremely fortunate, as we had the resources and ability to research and pay for doctors and quality treatment. My heart goes out to children with chronic symptoms for whom treatment has not worked, and to parents who don't have the resources, time, or ability to find the best treatment options for their kids.
There is reason for optimism, however. First, many dedicated doctors, researchers, health practitioners, and outreach and advocacy groups stand ready to help families seeking assistance.NatCapLyme and the CLDN are two such groups that helped my family, and there may be similar groups in your region that can provide needed information and support.
Second, everyone agrees that early detection and treatment is the best way to prevent Lyme Disease. If caught in its early stages, Lyme can be treated effectively with a relatively short course of antibiotics. Here are the preventive steps my family now follows, courtesy of NatCapLyme:
• Perform daily tick checks, especially when your family has been outdoors that day.
• Wear long, loose-fitting, light-colored clothes, and use an EPA approved insect repellant, preferably one that contains DEET.
• Avoid tick-infected areas such as tall grass and dense foliage, especially in the spring when the ticks' eggs are hatching.
• Promptly remove attached ticks using fine-tipped tweezers, and send them off to a lab for testing (many local health departments and universities are also offering this service now).
• Upon finding an attached tick, consult immediately with your pediatrician or Lyme Disease specialist.
Besides following these precautions, parents should take the time now to consult with their pediatricians so they'll know in advance how to recognize and treat Lyme Disease. Hopefully, more parents will know what I didn't, and fewer children will have to miss out on spring activities and the joy of playing outdoors.
John McCormick and his sons William and Connor are the authors of "Dad, Tell Me A Story," How to Revive the Tradition of Storytelling with Your Children (Nicasio Press 2010). For more information about family storytelling, visit the authors' website and blog.
Follow John McCormick on Twitter: www.twitter.com/DadTellMeAStory
