Children With Lyme Disease: Delays and Challenges
Lyme disease can be difficult to recognize in children
Parents describe diagnostic delays and persistent symptoms
Illness may disrupt school, activities, and family life
Parents of children with Lyme disease often describe a difficult path marked by delayed diagnosis, persistent symptoms, and frustration with the medical system.
In one Ontario study,101 Comments in moderation adolescents ages 15 to 19 were among the age groups with the highest proportion of hospitalizations for Lyme disease.1
Children with Lyme disease may present with symptoms that are difficult to recognize, which can complicate diagnosis and delay treatment.
“Increasing numbers of Canadians, including children and adolescents, are being infected with Borrelia burgdorferi,” write Gaudet and colleagues in their study Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy.2
The Impact of Lyme Disease on Children and Families
While many chronic childhood illnesses have been studied, the experiences of families with children who have Lyme disease have received relatively little research attention.
To better understand these experiences, researchers conducted a qualitative analysis of written correspondence from 23 parents of children and adolescents with Lyme disease. The parents were recruited through two Canadian Lyme disease support groups.
The study focused on families who reported that satisfactory treatment had not been obtained over months or years. Therefore, its findings describe the experiences of this particular group and should not be interpreted as representing every family affected by pediatric Lyme disease.
“The experiences of parents evolved from feelings of worry for the child to frustration with the lack of a helpful treatment, to mistrust of physicians’ actions,” the authors report. In some cases, this progression led parents to reject the conventional healthcare system as a whole.
What Parents Reported
The following parent experiences highlight challenges involving recognition, testing, medical care, and the effect of illness on a child’s daily life.
Lack of recognition
“My youngest child, who was 10 at the time, had TWO BULLS EYE RASHES… so I took my child to that same family doctor and [the doctor said] ‘it can’t be Lyme. There’s no Lyme in BC.’”
Chronic distress
“He continued to get worse… he was crying all day, sad about being unable to play with his brother, and in pain.”
Missing milestones
“She was not able to undertake the many extra-curricular activities that define the teenage years… she has missed out on a lot and will never be able to get those years back.”
Concerns about testing
“I found myself hoping that something would show up on the tests… so they had no choice but to address it.”
“If only doctors were trained to recognize and treat symptoms instead of relying on a blood test that is known to be inadequate, those costs and invasive tests could have been avoided.”
Dismissal by clinicians
“As a child of 15… she was dismissed from countless medical appointments… ‘lab work is normal, there is nothing else I can do’… she felt abandoned by the medical community.”
Why Diagnosis Is Often Delayed
Parents reported that their children experienced a broad and evolving range of physical, cognitive, neurologic, and psychological symptoms.
This variety can complicate diagnosis, particularly when a child does not recall a tick bite, does not have a recognized erythema migrans rash, or has inconclusive laboratory findings.
Parents described diagnostic delays occurring alongside prolonged illness, disrupted schooling, reduced participation in activities, and missed developmental milestones.
Frequently Asked Questions
Why can Lyme disease be difficult to recognize in children?
Children may develop physical, cognitive, neurologic, or psychological symptoms that overlap with other conditions. Diagnosis may be more difficult when a child does not recall a tick bite, does not have a recognized rash, or has inconclusive laboratory findings.
What challenges did parents report?
Parents described difficulty obtaining a diagnosis, concerns about testing, dismissal of their observations, persistent symptoms, disrupted schooling, and children missing social or developmental milestones.
Does this study represent every family affected by pediatric Lyme disease?
No. This was a qualitative study of correspondence from 23 parents recruited through Canadian Lyme disease support groups. It provides insight into the experiences of these families but should not be generalized to every child with Lyme disease.
Clinical Takeaway
Children with Lyme disease may present with complex and evolving symptoms that are not always recognized early. The experiences reported in this study also demonstrate how prolonged diagnostic uncertainty can affect children, parents, and relationships with clinicians.
Greater awareness and family-centered communication may help reduce diagnostic delays and improve the experiences of children with Lyme disease and their families.
Related Articles
Pediatric Lyme Disease
Recommendations Dismiss Seriousness of Lyme Disease in Children
Oppositional Behavior in Children With Lyme Disease
References
- Johnson, K. O., Nelder, M. P., Russell, C., Li, Y., Badiani, T., Sander, B., Sider, D., & Patel, S. N. Clinical manifestations of reported Lyme disease cases in Ontario, Canada: 2005–2014. PLOS ONE. 2018;13(6):e0198509.
- Gaudet, E. M., Gould, O. N., & Lloyd, V. Parenting when children have Lyme disease: Fear, frustration, advocacy. Healthcare (Basel). 2019;7(3):95.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
My 15 year old daughter was recently diagnosed with Lyme disease after 4 years of being continually misdiagnosed. She has suffered with a continual debilitating headache for 4+ years along with nausea, dizziness, memory loss, brain fog, fatigue, ringing in her ears, and muscle weakness. We have finally found a physician who confirmed her diagnosis and she has been undergoing treatment trials for 8 months now but so far, her symptoms have persisted and are progressing and the Lyme remains. I am hoping to find others who suffer with the same symptoms and have found relief in some way while going through all the medication trials.
Many seem to have found help in Stephen Harrod Buhner’s books, which include detailed explanations and protocols for herbal treatment of Lyme and related co-infections. May be worth looking into.