Children With Lyme Disease: Delays and Challenges
Parents of children with Lyme disease often describe a difficult path marked by delayed diagnosis, persistent symptoms, and frustration with the medical system.
In fact, one study found that in Ontario, Canada adolescents ages 15 to 19 comprised the group most frequently hospitalized for Lyme disease.¹ The number of cases is expected to increase.
Children with Lyme disease often present with symptoms that are difficult to recognize, which can delay diagnosis and 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.
The Impact of Lyme Disease on Children and Families
While many chronic childhood illnesses have been studied, the experience of families with children who have Lyme disease has received relatively little research attention.
To better understand this, researchers examined correspondence from 23 parents of children diagnosed with Lyme disease. Parents were recruited from Canadian Lyme disease support groups.
“The experiences of parents evolved from worry for the child to frustration with the lack of helpful treatment, to mistrust of physicians’ actions,” the authors report. In some cases, this led to a rejection of the conventional healthcare system.
[bctt tweet=”Children with Lyme disease often feel alone, abandoned, and hopeless.” username=”DrDanielCameron”]
What Parents Report
The following parent experiences highlight common challenges in recognizing and treating Lyme disease in children.
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.”
Unreliable 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 range of physical, cognitive, neurologic, and psychological symptoms.
This “diverse and evolving set of symptoms” can make Lyme disease difficult to diagnose, particularly when children do not recall a tick bite or when laboratory tests are inconclusive.
Delays in diagnosis may increase the risk of prolonged illness and missed developmental milestones.
Clinical Takeaway
Children with Lyme disease may present with complex and evolving symptoms that are not always recognized early.
Greater awareness of these patterns may help reduce delays in diagnosis and improve outcomes for affected children and their families.
Related Articles:
Only a minority of children with Lyme disease recall a tick bite
Recommendations dismiss seriousness of Lyme disease in children
References:
- Johnson KO, et al. Clinical manifestations of Lyme disease in Ontario. PLoS ONE. 2018.
- Gaudet EM, et al. Parenting When Children Have Lyme Disease. Healthcare (Basel). 2019.
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.