Supporting your Child’s Recovery from Acute Lyme Disease

If your child has been diagnosed with Lyme disease, you may be worried about how long they will remain ill or whether there will be any permanent issues caused by the infection.

It is important to keep in mind that people who contract Lyme disease and who are diagnosed and treated promptly, have the best chance of making a complete recovery.

Lyme disease is a bacterial infection that is caused by an infected tick bite. If your child develops a spreading erythema migrans rash after a tick bite, which sometimes has a bull’s eye type appearance, but can also be atypical, this is diagnostic for Lyme disease.

Your doctor does not need to do a blood test or wait for the results of a blood test to make the diagnosis. Treatment should be started immediately. See the NICE Guideline for Lyme disease for further information.

Check that your child has been prescribed the correct dose of antibiotics

The NICE guideline for treating Lyme disease was published in April 2018 and some doctors can be unaware of the recommended dosages of antibiotics necessary to treat Lyme disease. Dosages are higher than those usually prescribed for children for other infections and sometimes this can result in children being under treated.

The graphic below shows the various antibiotics doctors can prescribe for adults and children with Lyme disease. Children’s dosages are based on age and weight. If you think that the dose of antibiotics that your child has been prescribed may be too low, contact your surgery and ask them to confirm. It is very important your child is prescribed the correct dose of treatment so make sure your doctor weighs your child to calculate the dose accurately.

Recognise the symptoms of Lyme disease

Lyme disease can cause a wide range of symptoms. These include flu-like symptoms, headache, neck ache, sore muscle and joints, physical and mental fatigue and generally feeling very unwell. Some children develop facial palsy where one side of the face droops. Young children can find it very difficult to describe how they are feeling and their behaviour might change, particularly if they are frustrated about being unable to tell you how they feel. This can result in irritability, clinginess and temper tantrums.

In older children, a bad temper and even rage can be a way of trying to tell you they are feeling very unwell. Reassure your child that everything is being done to achieve a speedy recovery.

Keep your child comfortable

Lyme disease can cause headaches, fevers and muscle and joint pain and it is worth asking a qualified pharmacist or medical professional to recommend a painkiller to make things more comfortable if possible.

Make sure your child has plenty of rest

Lyme disease can cause extreme fatigue. Allowing your child to rest as much as they need to during their treatment can help alleviate this. Your child may need to stay home from school and miss activities if they are feeling too fatigued or unwell or join in. Listen to your child about how they are feeling and how active they want to be. They might feel like playing with friends less and not want to be in noisy environments or bright lights. Some children have a mild reaction to Lyme disease and may be able to attend school while others may need more rest. Early nights and time away from screens before sleep plus a warm bath before bed may help your child get a good night’s sleep.

Encourage your child to eat well and stay hydrated

Lyme disease can be very debilitating and your child might lose their appetite and feel very lethargic. Nutritious food, little and often, can help with lack of appetite. Try and help your child to stay well hydrated.

Talk to your child about Lyme disease

Explain to your child that they are suffering from an infection and that the medicine they have been prescribed is to kill the bacteria that causes the infection. Treatment itself can make them feel very unwell in the beginning but all is being done to help the body fight the infection and to help them feel better.

When to go back to the doctor

  • If symptoms get worse or your child develops new symptoms after starting antibiotic treatment, contact your doctor to assess whether this is an adverse reaction to the medication. Your child may be suffering from a Jarish-Herxheimer (Herx) reaction which is when the antibiotics cause the bacteria to die off, triggering inflammation. Sometimes people feel worse than before treatment started if this reaction is taking place but is usually short lived.
  • If your child is still symptomatic after the 3 week course of antibiotics, return to your doctor to discuss whether a second course of treatment is appropriate. The NICE Guideline allows your doctor to consider this. Your doctor will assess any remaining symptoms your child may have. These may include fevers, night sweats, muscle aches, swollen or painful glands, excessive tiredness and headaches.

Do not hesitate to contact your GP to discuss ongoing symptoms if your child is unwell.

Additional information:

Cranial nerve, peripheral nerve and central nervous system involvement

In some cases, the bacteria that causes Lyme disease can affect the cranial nerves in the face causing facial palsy (one-sided drooping of the face) which may take some time to recover.

Facial Palsy UK is a good source of support for this condition. The bacteria can also affect the peripheral nerves which can cause numbness, tingling and shooting pains.

In severe cases, the bacteria can affect the central nervous system, causing a meningitis type illness. In this case your child will be admitted to hospital for treatment. If your child has been affected in this way the Meningitis Research Foundation website is a good source of information and support.

Useful links:

Lyme Disease
Facial Palsy
Meningitis Research

Disclaimer: This page has been produced by patients, for patients and reflect advice from the following sources: NHS Website, BMJ, NICE Lyme Disease Guideline, and RCGP Lyme Disease Toolkit. For further information, please visit these links. If you have any concerns about your child’s symptoms and treatment, please contact the prescribing doctor without delay. This page does not substitute medical advice from a professional.

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