A Reader Story: Why You Should Be Aware of Lyme Disease This Summer

My boys, aged 3 and 7, love playing outside and can often be found tumbling along the lawn or hunting for bugs in bushes. As the weather has now warmed up and the bugs are plentiful in the garden, I’m doing my own kind of bug hunting. For ticks! After reading a lot about ticks and Lyme disease in the news recently, I wanted to share our experiences from last summer. Fin, then 6 years old, contracted Lyme disease, but it was a long road until his eventual diagnosis. We hope that by sharing our experience of the disease, it may help others be on the look out for the less obvious symptoms.

The first indications of Lyme disease

The first thing to say is that we never saw a tick! Our first indication that something was wrong was when we noticed 2 large lumps on the back of Fin’s head one night. A swift trip to the doctors the next day revealed that these were enlarged lymph nodes, and the doctor suggested that his body was fighting a virus. The only other ‘symptom’ at this point was a sore point on the top of his head but, upon examination, the doctor couldn’t find anything amiss and this was dismissed. The following day, more lymph nodes became swollen – this time in his neck. Despite another trip to the doctors and reassurance that nothing serious was wrong, mother’s intuition was telling me that there was more going on.

However, Lyme Disease was not on my radar at all. There was no bullseye rash, no fever or flu, no headaches and Fin was perfectly well. The area on the top of his head that he’d originally told us was sore now looked to be scaly and dry. However, whilst visiting 2 further doctors to gain more opinions on the enlarged lymph nodes we were told that this wasn’t related. But we just couldn’t let this connection go.

After about 4 days, the lymph nodes in Fin’s head started to go down. His scalp was also healing and his general health remained good. If it wasn’t for the knot in my stomach, we could have believed the doctors that it had just been a virus. But then, the rash started to appear. This wasn’t an NHS website kind of rash though. It was the kind of rash that was so faint that only a parent would notice it as being something different on their child’s skin. It started behind Fin’s ear, and over the next week or so slowly crept over his face and down his neck like a tidal wave. It was so faint that it didn’t show up on any photos. I felt conscious about going to the doctors again and wasn’t even sure that they’d see it. But the knot tightened. I googled A LOT of things over those few weeks. One of the things I’d read about was Lyme disease but the link was so tentative – the enlarged lymph nodes and the faint rash. But as he was so well in himself, it didn’t seem to fit.

The next day, Fin woke up telling me that he couldn’t close one eye properly. I thought he must just be sleepy and carried on with the morning school rush. But then he laughed at something and I noticed that his smile was different. The right side of his face wasn’t working as it should. We went straight to A&E where they diagnosed him with Bell’s Palsy – a condition that can paralyse the nerves in one side of your face. A condition that can be a symptom of Lyme disease.

The official diagnosis

It was sitting in a cubicle in A&E that I spotted this new circular rash on the inside of his knee. This was the final piece of the jigsaw. After going over in detail again with the nurses what had happened over the past few weeks (and quite a few tears in the waiting room!), they finally agreed to treat him for Lyme disease. It took a further 6 weeks to get the official diagnosis, by which point we were grateful to have completed the antibiotics. The rashes very quickly disappeared and Fin fully recovered from the Bell’s Palsy after several weeks. Thankfully his treatment for Lyme Disease has been effective, but it felt like treatment that we really had to push for.

Fin later told us that he’d been playing in some long grass on his school field around this time. It’s likely that he had a tick bite on the top of his head which he knocked off before we could see it. It’s useful to remember that…

• he never had a fever, headache, achy joints or muscles
• there was never a bite mark to be seen
• his enlarged lymph nodes were the only symptom for several days
• when the rash did appear, it was incredibly faint and appeared as a tidal wave
• Bell’s Palsy can be a symptom of Lyme disease
• we hadn’t been in a wooded area. The tick is likely to have have come from the school field or the garden

We now check for ticks at the end of each day – even if we’re just playing in the garden. Lyme disease is very rare, and by sharing Fin’s story we don’t want to cause alarm. Our hope is that the information about Fin’s symptoms can help make other parents aware of the less obvious signs to look out for. And, most importantly, to trust your instincts if something doesn’t feel right. Thank goodness for mother’s intuition!

Amy Jones, Founder of Inspiration for Investigation a digital swap shop for children’s activity ideas, books and toys.