Lyme Disease and Kids - My Family's Story
What is Lyme Disease?
Lyme Disease is a bacterial infection that is transmitted to humans by deer ticks. The disease got its name when a high number of cases of children with arthritic-type symptoms were reported in and around Lyme Connecticut. Further investigation revealed that the children were not suffering from arthritis at all, but rather that they had contracted a bacterial infection. The source of the infection was eventually traced to deer ticks. Cases of Lyme Disease have been identified through-out the United States, however the highest concentration occurs in the northeast and mid-atlantic states along with Wisconsin, Minnesota and California. Lyme Disease can also be found in Asia, Europe as well as in portions of South America.
Lyme Disease Fast Facts
- In 2010 nearly 30,000 people were infected by Lyme Disease in the US.
- Reported cases of Lyme Disease are most common among boys in the 5-9 age range.
- In 2010 the state of Delaware had the highest incidence of Lyme Disease, followed by New Hampshire and Connecticut.
Symptoms of Lyme Disease
During the early stages of the disease you may experience flu-like symptoms including a fever, chills, headaches, muscle aches and fatigue. You may also notice a “bulls-eye” rash at the site of the tick bite. Over time the symptoms will progress to include swollen and painful joints. The pain can be quite severe and often migrates from one joint to another. Lyme Disease can also affect the nervous system causing a stiff neck, numbness or weakness in the arms and legs and even memory problems. The symptoms of Lyme Disease can vary widely from case to case and from person to person, further complicating attempts to diagnose it.
My daughter's story
I do not live in an area that is known for deer ticks or Lyme Disease. However, my parents do. I was aware from conversations with them that they often found deer ticks on themselves after working in the garden or walking in the yard. Even so, I didn’t give the disease much thought. I spent most of my childhood rambling through the woods and fields around my parents’ home and although I occasionally found dog ticks crawling on me, I never saw a deer tick, let alone got sick from one. Perhaps that is why I didn’t take greater precautions to protect my children from tick bites when we took a family vacation to visit my parents over Memorial Day 2011.
During our visit my daughter spent a lot of time in the yard and garden, but did not venture into the woods or fields. Although I had found ticks on the kids from time to time in the past, there were no tick sightings on this particular visit, and no special reason to be concerned. We had visited my parents many, many times before, always without incident.
Protecting your child from tick bites
Some things you can do to prevent/limit your child's risk for being bitten by a tick:
- Avoid wooded or grassy areas as much as possible. When walking in woods stick to the center of the trail and avoid the brush growing on either side.
- Apply a repellent (DEET works well but is toxic so caution is advised).
- Have your child wear long pants, if possible.
- Remove clothes and wash them immediately when your child gets home.
- Inspect your child carefully for ticks, paying special attention to the hairline, in and around ears, behind the knees and under arms. Deer ticks are very small - about the size of a fleck of pepper or a sesame seed.
- Have your child shower right away after playing in a potentially tick-infested area.
- Use tick repellent treatments on your pets.
Check out the CDC for more information and recommendations.
Within 10 days of returning from our visit my daughter began to run a fever. It was nothing too alarming at first, but then it spiked up to around 105 degrees and she started vomiting. At this point I contacted the pediatrician because the combination of high fever plus vomiting in my kids usually means strep throat. The doctor tested her and found that she did not have strep. He sent us home and recommended fluids and rest. After a few days the fever subsided and everything seemed OK.
A couple of weeks after her fever went away it returned, only this time it was a persistent low-grade fever between 99.5 and 100. My daughter also suffered from lethargy and a loss of appetite. Concerned, I took her back to the doctor. They checked her for the usual culprits – ear infection, sinus infection, etc. When they couldn’t find anything wrong they ordered a routine blood test to check her white count. It was at this time that I first suspected that my daughter might have Lyme Disease. I mentioned this possibility to the doctor and he didn’t discount it, but didn’t seem particularly concerned about it either. The blood test came back normal and I was told the fever should go away on its own.
After about a week the fever did go away, but my daughter’s lethargy and lack of appetite continued. As the summer progressed she ran low-grade fevers off and on. Since her blood test hadn’t shown any problems I didn’t know what to make of this and started to wonder if my thermometer was broken. In the end it was my daughter’s complete lack of interest in food and her general state of exhaustion that convinced me something was going on.
About two and a half months after our family vacation, my daughter started complaining of joint pain. At first it was in her shoulders after a swim party and I thought it was the normal muscle pain that results from strenuous activity. The shoulder pain lasted a few days and then went away. Shortly after, however, she started complaining that her knees hurt. Again I thought this was normal muscle pain from running in gym class.
Right after the knee pain went away she started having pain in her ankles. This time her right ankle swelled and she was unable to walk on it at all. I took her back to the doctor and was able to get her in to see her actual physician this time instead of the doctor on-call. He conducted a thorough examination during which I once again asserted my suspicions that she had Lyme Disease. He listened carefully as I went over the timeline of her symptoms, beginning with the trip to visit my parents and ending with the joint pain. He agreed that Lyme Disease could indeed be the culprit. Once again a blood test was ordered and this time it came back positive. Finally we knew for sure what had been making my daughter sick all summer.
The doctor initially prescribed a fairly strong antibiotic. Unfortunately, it caused nausea and my daughter was unable to keep it down. The doctor switched her to a more mild antibiotic which she had to take three times a day for a month. Within a week there was a marked improvement in my daughter’s health. By the time she finished the antibiotic she had started gaining weight back and had returned to her vivacious self.
The lessons learned
- Lyme Disease is no joke. If you live in or plan to visit an area in which Lyme Disease is prevalent, take precautions to prevent tick bites.
- You can have Lyme Disease without the bulls-eye rash. Although the rash does appear in roughly 80 percent of cases, not everyone gets it. Don’t make the mistake of assuming that if there wasn’t a rash it can’t be Lyme Disease. My daughter never had a rash.
- You know your child better than anyone. If you feel that something is wrong, be persistent with your child’s doctors. Make sure you let them know if your child has been to a part of the country where Lyme Disease is common. Because we live in an area where the disease is rare, my daughter’s doctors didn’t immediately consider it as a potential diagnosis.
- Keep track of your child's symptoms, when they presented themselves, their severity and duration. This will be helpful in determining a diagnosis.