Lyme disease and kids: What you need to know before this summer’s outdoor adventures

(Left to right: Quentin, Erik, Kara and Peyton Bell)

By Rachael Mattice

For OC Family Magazine

Contributor’s Note:Contracting Lyme disease at age 10 left me questioning many things, including the efficacy of Western medicine and the reliability of news sources to publish accurate research. Many of my questions still remain 18 years later despite small advancements in the diagnosis, testing and treatment of Lyme disease. One control I have as an 18-year survivor of this illness is the dissemination of accurate news, hoping it will educate others and make a positive impact in families’ lives.”

See the e-magazine version HERE

Ladera Ranch resident Kara Bell went to a soccer camp in London, England at the age of 14 expecting to sharpen her team captain-ready agility when she experienced a sudden burst of extreme stomach pain while running through a forest. Although the mysterious pain dissipated, she came back to the U.S. with chronic fatigue so debilitating she failed to make her freshmen soccer team.

She did not expect Lyme disease — the tick-borne infectious disease she contracted caused by the bacterium spirochete Borrelia burgdorferi — would ruin her health for the next 20 years of her life, let alone the health of her two children.

What is Lyme disease?

Lyme disease is the most prevalent tick-borne illness in the world today, infecting more than 300,000 new U.S. citizens each year, 25 percent of which are children between the ages of 5 to 9. Due to the amount of time spent outdoors, children are at a higher risk, especially if they are born immune deficient.

Although Bell doesn’t recall being bitten nor a bull’s-eye rash, her kids Quentin, 11, and Peyton, 9, exhibit Lyme disease symptoms too, with the eldest being the most recent to be officially diagnosed. Other than being directly bitten by a deer tick, new research lends support to other forms of transmission, including sexual transmission and in utero.

Among the cases in the Centers for Disease Control surveillance report, over 3,000 cases have been reported in California — especially near popular state attractions like Yosemite, Mammoth Lakes, Lake Tahoe and Redwoods — with the highest transmission rates occurring during the prime camping monthsof May, June and July. Adequately educating yourself and your family on the rising epidemic of Lyme is the most important tool you will need for your pack and weekend getaways this summer.

How does Lyme disease manifest?

Nicknamed the “great imitator” because it emulates many other diseases, Lyme affects all major systems, including the neurological, endocrine and immune systems, where patients of all ages are infected with a plethora of individualized symptoms and are vulnerable to recurrent and prolonged infections.

According to Chitra Bhakta, M.D., a Pans, Autoimmune Disorders and International Lyme and Associated Diseases Society (ILADs) physician based out of Newport Beach, Lyme can present itself in children in recurrent infections, chronic diarrhea, sleep disturbances, chronic fatigue or hyperactivity, among many other symptoms.

“If parents suspect their child has Lyme, they should monitor how they are functioning,” said Bhakta. “Most hyperactivity in kids is normal, but when it’s not normal is when it affects the focus and cognitive functioning at school. Panic attacks and depression are also both uncommon in children and this needs to be looked into. Children with Lyme can also develop strange appetites and dysfunctions like avoiding food altogether or over eating.”

For Bell’s son Quentin, adrenal fatigue and neurological symptoms such as ADHD, anxiety, depression and brain fog are the worst.

“I noticed he had a difficult time getting out of bed every day, and after one of his basketball games, he came home bawling and told me that he wanted to die,” said Bell. “That’s not normal for an 11-year-old boy to say. He couldn’t do regular tasks like writing down his homework assignments or remembering the combination to his locker and then he’d start to panic and have meltdowns.”

Tests and treatment

Due to the mimicking nature of the disease and the dozens if not hundreds of symptoms, it’s not uncommon for many patients to visit countless physicians and specialists before they receive an accurate diagnosis.

Current testing methods such as the ELISA and Western Blot tests are considered fairly unreliable, with many producing “false negative” results. This could cause an average delay in diagnosis of four and a half years. This delay, as lived by Bell and many others like her, can allow the disease to progress from a generally treatable illness to one more unresponsive to treatment, leaving potentially devastating consequences to the patient for the rest of their life.

“New research is showing the Lyme spirochete as being difficult to obtain in a blood sample because it sticks to inner walls; that’s how it moves,” said Bhakta. “It’s not in the central flowing blood. Once it penetrates deeper tissue, it’s very difficult to catch even some particles of the Lyme spirochete.”

Accurate testing models is only one of the many challenges to the complexity of Lyme disease, as is treating the polymorphic organism-infection, the controversy of chronic Lyme, stigma and shame, lack of research funding, a viable vaccine, joint camaraderie within the Lyme advocacy community and prevention.

Prevention

“{If you’re preparing for a trip outdoors this summer}, wear light colored clothing, long socks and closed-toe shoes at all times and make sure your neck is protected,” said Bhakta.”

Many advocacy organizations such as Global Lyme Alliance, American Lyme Disease Foundation, Lyme Disease Research Alliance or Lyme Disease Association, Inc., offer support forums, curriculums for classroom settings, medical directories, donation portals, educational events, published research, information co-infectionsand other resources for families.

“Through this pain and loss, I want something good to come out of this and share our story and raise awareness about this disease,” said Bell. “I don’t want my son or daughter to suffer through Lyme disease like I have. I feel like we are going to get better and it’s our responsibility to help others.”

More tips for prevention:

-Use repellent that contains 20 percent or more DEET, picaridin, or IR3535 on exposed skin for protection that lasts several hours.

-Always follow product instructions. Parents should apply this product to their children, avoiding hands, eyes, and mouth.

-Use products that contain permethrin on clothing. Treat clothing and gear, such as boots, pants, socks and tents with products containing 0.5 percent permethrin. It remains protective through several washings. Pre-treated clothing is available and may be protective longer.

-Bathe or shower as soon as possible after coming indoors (preferably within 2 hours) to wash off and more easily find ticks that are crawling on you.

-Conduct a full-body tick check using a hand-held or full-length mirror to view all parts of your body upon return from tick-infested areas. Parents should check their children for ticks under the arms, in and around the ears, inside the belly button, behind the knees, between the legs, around the waist, and especially in their hair.

About the author:

Rachael Mattice is the Group Managing Editor for Picket Fence Media, owner of the hyper-local publications San Clemente Times, Dana Point Times and The Capistrano Dispatch. Also a freelance music journalist and contributor for other OC publications like the OC Weekly and OC Metro Magazine, Rachael pulls from her versatile background in journalism, digital marketing and visual content creation to produce high-quality assets for Orange County’s diverse readership. She can be reached via her website,Facebook, Twitter, Instagram or LinkedIn.