PARENTS OF CHILDREN WITH LYME: SIGNS THAT LOOK LIKE DEPRESSION, ANXIETY OR ADHD
Updated: 17 hours ago
PARENTS OF CHILDREN WITH LYME: SIGNS THAT LOOK LIKE DEPRESSION, ANXIETY OR ADHD
LYME IN KIDS CAN LOOK LIKE SOMETHING ELSE
DEPRESSION? ANXIETY? ADHD? ACTING OUT?
I understand this challenge as a patient myself and with my own child facing these diseases.
I greatly empathize for parents facing this helpless feeling.
We hope this post helps in some way.
Short on time or energy? A quick-view graphic with the key points is at the bottom of this post.
IN THIS POST
-Why Lyme in kids is easy to miss
-What parents may see, and what it gets mistaken for
-Please don't dismiss them
-The newest research
-Older information that still matters
-What parents can do
-Support for you, the caregiver
WHY LYME IN KIDS IS EASY TO MISS
-Children ages 5 to 9 have some of the highest rates of Lyme disease.
-Young kids often don't have the words to explain what feels wrong, so it may come out as crankiness, tears or acting out.
-Some kids don't tell their parents how they feel unless someone asks, so it helps to ask them directly.
-Many kids never get the bull's-eye rash, and many never had a tick bite anyone noticed. Among Dr. Charles Ray Jones's young patients, only about half had a known tick bite, and fewer than 1 in 10 had the rash.
-Symptoms can show up weeks or months after a bite, even one nobody saw.
-Mood and behavior symptoms can come and go, which can confuse families and teachers.
-Standard Lyme tests can miss it, and they miss more cases when Lyme affects the brain and nerves than when it affects the joints.
WHAT PARENTS MAY SEE, AND WHAT IT GETS MISTAKEN FOR
-Sadness, tearfulness, pulling away from friends or favorite activities. Often mistaken for: depression.
-New worry, panic, a racing heart. Often mistaken for: anxiety, or stress from a change like a new school.
My Depression and Anxiety posts are linked below.
-Trouble focusing, forgetting homework, daydreaming. Often mistaken for: ADHD.
-Irritability, outbursts, mood swings, defiance. Often mistaken for: acting out or "just a phase."
-Exhaustion, less interest in play, falling asleep in class. Often mistaken for: laziness or too much screen time.
-Headaches that last for days, aches, "I don't feel good." Often mistaken for: growing pains, or making it up to skip school.
-Dropping grades, trouble reading or writing. Often mistaken for: a learning disability.
-Sudden obsessive thoughts, tics or changes in eating. Often mistaken for: only a mental health issue, like OCD or an eating disorder.
Learn more in my PANS / PANDAS post below.
-Sleep troubles, sensitivity to noise and light, confusion.
The biggest clue: a change that is out of character for your child.
PLEASE DON'T DISMISS THEM
Being dismissed is something I feel so passionately about, because I lived it. I know how painful it is to tell someone you are sick and not be believed. Our kids deserve so much better.
When your child says they don't feel well, please believe them. Kids with Lyme are too often told it is all in their head, or that they are making it up to get out of school. Listening to them is one of the most loving things we can do.
More on choosing compassion over tough love:
THE NEWEST RESEARCH
-2026: Global Lyme Alliance is funding a nationwide study led by Dr. Laura Prichett at Johns Hopkins, working with Dr. Robert Yolken. They are looking at whether kids with Lyme are more likely to develop anxiety, depression, behavior changes and sudden symptoms like obsessive thoughts, changes in eating or tics. It is expected to be the first large study of its kind in children in the U.S. Results are not out yet.
-2024: Dr. Charlotte Mao, a pediatric infectious disease doctor, shared in a Bay Area Lyme Foundation talk that kids with Lyme can have irritability, big mood swings, depression, new anxiety, panic with a racing heart, defiance, personality changes, trouble concentrating, dropping grades, losing friends and sleep problems. She pointed to a study of children with Lyme affecting the nervous system where 38 percent had mood or behavior changes, second only to headaches. Her advice to parents: trust your instincts, and don't be afraid to push for testing.
-2024: Global Lyme Alliance shared how Lyme can affect kids at school, including trouble concentrating, brain fog, mixing up words or letters, forgetting assignments, sleepiness in class and being too tired for recess. Kids with Lyme may qualify for school support through a 504 plan or an IEP.
-2022: In a LymeDisease.org interview, Dr. Charlotte Mao shared that some young children with Lyme develop anxiety, depression, panic attacks or obsessive-compulsive symptoms. Early Lyme in kids can be mistaken for irritability or a virus like the flu, and the rash often doesn't look like a classic bull's-eye, so check the scalp and skin folds too. Her reminder to parents: trust that you know your child best.
-2021: A Global Lyme Alliance funded study of nearly 7 million people in Denmark found that people diagnosed with Lyme had a 28 percent higher risk of mental health disorders. For mood disorders, the highest risk was in children under 10 and kids ages 10 to 19, and the risk was highest in the first years after diagnosis.
-2021: Dr. Rosalie Greenberg wrote for LymeDisease.org that mood, behavior, anxiety and learning symptoms in kids with Lyme are often overlooked because they are less obvious than joint pain. She noted the research in children is still small and more studies are needed.
OLDER INFORMATION THAT STILL MATTERS
-2019: Researchers at Mount Allison University studied 23 parents of children with Lyme. Parents moved from worry for their child, to frustration with the lack of helpful treatment, to mistrust of doctors. If you feel this way, you are not alone.
-2019: Global Lyme Alliance shared that Lyme in kids is often mistaken for ADHD, learning disabilities, depression, mono, growing pains, normal stages of growing up, too much screen time, laziness, daydreaming or acting up.
-2016: Holly Ahern wrote for LymeDisease.org that teachers, the school nurse or the school psychologist may notice changes before parents do, like falling grades, late or messy work, missed school, memory lapses, falling asleep in class and pulling away from friends.
-Dr. Charles Ray Jones and Dr. Steven Harris (shared again by LymeDisease.org in 2022) wrote that attention trouble from Lyme can look like attention deficit disorder to teachers. They also said to watch for a new drop in schoolwork, new short-term memory problems, nightmares and new bedwetting.
WHAT PARENTS CAN DO
-Trust your gut. You know your child best.
-Watch for behavior that is out of character, even weeks or months after a tick bite.
-Ask your child gently and directly how they are feeling.
-Believe them. Don't dismiss their complaints, even when tests look normal.
-Ask about testing for Lyme and coinfections, and look for a Lyme literate doctor who treats children.
-Talk with your child's school about a 504 plan or an IEP if they need support.
-If your child ever talks about hurting themselves, call or text 988 right away.
SUPPORT FOR YOU, THE CAREGIVER
Caring for a sick child is exhausting and lonely at times. Please take care of yourself too. My caregiver posts are for you, and you will find them below.
RELATED RISE ABOVE LYME POSTS
CAREGIVERS
COMPASSION OVER TOUGH LOVE FOR CAREGIVERS
PANS / PANDAS
MENTAL HEALTH
DEPRESSION AND ANXIETY
DEPRESSION AND ANXIETY - POSSIBLE SOLUTIONS
MOOD, IRRITABILITY AND RAGE
BRAIN FOG
PREGNANCY AND LYME
HOW TO HANDLE A TICK BITE
SOURCES
Global Lyme Alliance, Understanding the Impact of Lyme Disease on Children's Mental and Behavioral Health (2026)
Bay Area Lyme Foundation, Dr. Charlotte Mao, Young Hearts, Hidden Battles (2024)
Global Lyme Alliance, Navigating the School System and Accommodations for Kids with Lyme Disease (2024)
LymeDisease.org, Dr. Charlotte Mao, Recognizing and Treating Lyme Disease in Young Children (2022)
Global Lyme Alliance, Lyme Disease and Mental Disorders Study (2021)
LymeDisease.org, Dr. Rosalie Greenberg, When Children and Adolescents with Lyme Have Neuropsych Symptoms (2021)
LymeDisease.org, Children with Lyme Disease (2020)
Healthcare, Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy (2019)
Global Lyme Alliance, Kids and Lyme Disease: Cognitive Symptoms and School (2019)
LymeDisease.org, Holly Ahern, The Effects of Lyme Disease on Children and Schools (2016)
LymeDisease.org, Dr. Jones's Still-Relevant Advice on Children with Lyme Disease (2005, shared 2022)
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.
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