A mother’s anonymous account of the struggles she faced obtaining appropriate treatment for her son’s Lyme disease.
Early symptoms in paediatric Lyme disease
On 23rd May 2026, I found a red mark on my 5-year-old son’s lower back. On closer look I noticed it was the mouthparts of a tick. I attempted to remove this, but couldn’t remove the whole thing. We had no idea how long the tick would have been attached for before he must have scratched it off.
One week later on 30th May, he started having flu-like symptoms. He had a fever, headache, hot and cold sweats, fatigue, joint paints, and he was also vomiting. On 31st May I took him to the minor injuries unit as soon as they opened that morning. His temperature had hit 40 °C, even after taking medication to bring it down.
The doctor said it was unlikely to be Lyme disease as he didn’t have the typical bulls-eye rash. But they prescribed one week of antibiotics (amoxicillin), apparently the correct dosage for his weight and age.
Amoxicillin dosage errors cause concern
The following Friday (5th June) I received a phone call from my GP who stated that my son had been on the wrong dosage of antibiotics, as it should have been double the amount for his weight, due to Lyme disease being such an aggressive illness.
They spoke to paediatrics at the hospital and then rang me back to confirm they’d prescribed the correct dosage for the last two weeks of treatment. We also booked the ELISA blood test for 6th July (almost 7 weeks post tick bite). My son finished the last two weeks of treatment. He then had his blood test and the results came back positive for Lyme disease.
Undertreatment leads to worsening symptoms
Since then he has had worsening symptoms – headache, joint pain in his legs, fatigue – and I am currently trying to arrange to have the correct dosage of treatment, or repeat treatment to make sure the Lyme disease is not an active infection.
The importance of parental advocacy in Lyme disease
We do not know how long the tick had been attached for. All I know is everyone told me it is extremely unlikely to contract Lyme disease from a tick bite, and to not worry. I was right to listen to my gut and be my son’s voice!
Resources for parents
It’s so important to thoroughly check children for ticks after time spent outside. Learn more about tick bite prevention and Lyme disease in children.
Read our information on supporting your child’s recovery from Lyme for the recommended antibiotic treatment for early-stage cases.