How to look after a child with 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 may be any permanent effects.

Most people who catch Lyme disease, and are treated for it promptly, do make a full recovery. This article gives you practical advice on how to look after your ill child, and on the kind of support they may need if any of the effects of Lyme disease persist.

In the beginning

1. Check the treatment dose

The dosages of some of the treatments for Lyme disease are a lot higher than the doses doctors usually prescribe and, with the guideline still fairly new, they sometimes prescribe too little. Go to our TREATMENT LOOK-UP PAGE, and if you think the dose your child has been prescribed may be too low, contact your doctor’s surgery and ask them to check.

2. Give your child all the rest he or she needs

This may sound a given, but do not organise play dates or family social events during the early stages of the illness, and when your child is convalescing remember they will continue to need lots of rest. Tiredness persists from one day to the next regardless of how long a child has slept or rested. This baseline level of tiredness in Lyme disease is not caused by physical activity, it is caused by the immune system and the adrenal glands working overtime to fight the infection.

Lyme disease usually lasts a lot longer than flu, and it feels worse – no matter how many weeks it goes on for.

3. Protect your child’s stomach and gut

Three weeks of antibiotics can upset a lot of people’s digestion, and sugar will make diarrhoea more likely. Plan nutritious meals, and treats without sugar. Give your child their favourite meals to help keep them feeling happy. Fruit is good, but try to switch most of your child’s five-a-day to vegetables instead.

If your child is prescribed doxycycline, it should never be taken with foods rich in calcium. Your child can still drink milk but it should be at least 2 hours away from any dose of doxycycline. Remember that rice milk and nut milks often have calcium added and should also be avoided. If the medicine makes your child feel sick, they can take half their daily dose in the morning and the other half in the evening. Your child should not lie down for about 2 hours after taking it. It is usually recommended to take doxycycline on an empty stomach but if this makes your child feel nauseous, then they can take it with meals.

If your child vomits after taking their medicine, they will obviously not be getting the treatment they need and you should return to the doctor immediately. Mild diarrhoea is not a cause for concern but if becomes severe, contact the doctor. If your child experiences diarrhoea during treatment, a course of probiotics may help their gut regain a healthy range of bacteria.

4. Use painkillers when they need them

Lyme disease can cause persistent headaches that last for days, or recur day after day. Give your child the appropriate dose of paracetamol or nurofen for their weight to relive these pains. If you have any concerns about how much you are giving your child, or which is the best choice of painkiller, ask a qualified pharmacist for advice.

5. Keep it all stress-free

Do not fret over missed homework or any other aspects of your child’s life which are being missed while they are ill. Inside, they are already more upset about it than you are, and this pressure is the last thing they need while they are handling this freaky illness.

Your little one will need a lot more time snuggling on a sofa while you read to them, and they may appreciate this regardless of their age. It has a greater beneficial effect upon happiness than anything your child may do alone.

If your child of any age wants to spend longer than usual watching television, bear in mind that you probably would want to do the same if you felt as ill as they do. If you feel it is becoming truly excessive, try to manage their viewing so there are educational programmes mixed in with fun ones.

6. When to go back to the doctor

If your child reacts badly to the medicine, contact your doctor to evaluate whether this is part of normal recovery or if there is an adverse reaction to the medicine. Some people have a high level of bacteria in their body by the time they begin treatment and for the first few days they struggle to excrete all the dead bacteria from their bodies. The accumulation of toxins in this period can cause headaches, body pains and in general feel far worse than the illness did before treatment started. (This is called a Jarish-Herxheimer reaction). It can last several days, but very rarely means treatment should stop. You can use pain killers, at the normal dose for your child, to relieve pains in this period.

Always contact your doctor if symptoms notably worsen, or if new symptoms occur. In particular, if a rash appears while your child is being treated with any medication whatsoever, you must take them to the doctor as a matter of absolute urgency. 

Is your child cured?

7. Some people need a second course of treatment

If your child seems ill after their 3 week treatment is completed, return to the doctor to discuss whether a second course of treatment is needed. Lyme disease can injure nerves and other types of tissue which can take months to heal.

Your doctor will need to know if there are still signs of active bacterial infection. These could include fevers, night sweats, muscle aches all over, swollen or painful glands, and might also include excessive tiredness and headaches. It is very important to return to your doctor without delay if your child still has these symptoms at the end of treatment, or if there are any other persisting symptoms which are causing your child to suffer.

As your child convalesces

8. Continuously evaluate how long your child needs to be off school

Sending your child back to school too early can cause a setback in recovery and ultimately mean more school time is lost.

Some children have a mild reaction to Lyme disease and may be able to return to school before their 3-week treatment course has finished. Others may need a second course of treatment and some may still take months or years to heal fully after this. In a minority of children, there can be some permanent symptoms.

If you have a child with outbursts and fractious behaviour after Lyme disease, this usually means they are exhausted to breaking point. Early nights and restful weekends are essential and you may want to ask your child’s school about the possibility of your child taking rest breaks if needed during the school day. Most schools have a rest area where children can lie down if they need to. A part-time initial return to school may be right for some children, and you should enlist your GP’s help if the school is not fully supportive of this. It is your GP’s job to document the support your child needs, and this is mentioned in the NICE guideline.

9. Make time to ask your child about their symptoms each day

Make time to ask your child each day about their symptoms. Dwell on progress and, if there are setbacks, try to analyse with your child what may have caused them so you can avoid repeating the mistake. Aim to teach very young children how to name their emotions, and physical symptoms: it may be useful to make flash cards.

It will be very important to your child that you listen intensely, and clearly acknowledge what they are suffering. If you try to cheer them up before recognising what they have been through, they may think you do not believe how ill they have really been. In children more than in adults, this can cause extraordinarily damaging and lasting psychological harm.

Lyme disease can cause extremely severe physical and mental tiredness. Symptoms can include frequent headaches, hyper-vivid and disturbing dreams, tingling, numbness or other nerve sensations which come and go, and a lack of co-ordination which can make routine tasks like writing, or even walking, difficult to do properly. They may also experience bizarre mental sensations which they are afraid to talk about. Lyme disease can cause a sudden loss of memory, not only of events. It can cause an overnight loss of skills such as reading, or a language. It may make people unable to recognise faces, or to commit new faces to memory; this can mean joining a new class will feel like being among strangers day after day. Children are likely to be afraid if this happens to them.

10. Explain to other people that the symptoms are invisible and strange

It is important to remember your child’s symptoms are mostly invisible. It will be your job to explain this to anyone and everyone on behalf of your child.

11. What to explain to your child

Remember to explain to your child that this is an infection, and that they are having medicine to kill the bacteria and make them better. Also explain that, unlike most bacteria, Lyme disease bacteria can get inside their brain and play tricks on it. It does not mean they have brain damage, and after the illness things will gradually go back to normal.

It is important not to make false promises about how quickly your child will recover, because nobody can predict this. However it is important to reassure them that they will get better. The longer their symptoms go on, the more they will need this encouragement.

Now for the most important thing. Tell your child you love them, every single day. Make sure you show it to them as well, all the time. There is nothing more important for anyone who is recovering from an illness than feeling deeply loved and supported.

12. Manage your child’s time and energy consistently

Having a lovely day out is great, but not if you need three days in bed to recover from it. Pay attention to how much your child can do each day and still be able to do the same amount the next day. Don’t go over this limit, and only increase it in gradual increments.

If you are caring for a child who is recovering slowly from Lyme disease, you will have to make some adjustments as a family. Glaring lights in shops may give your child a headache, getting taken to places where there’s nowhere to sit down will make all their muscles ache and by night time their glands may be swollen and their body drenched in sweat.

Social interaction is exhausting for people who have, or are convalescing from, Lyme disease. The illness affects their eyes and ears and means that interacting with other people is usually best done in short bursts. Ask your child if they want a play date, and keep it very short and sweet; your child will enjoy playing, but maybe not for as long as they used to.

There are plenty of things your child can do without getting exhausted. Try to plan things they can walk away from and return to as and when they feel up to it, rather than a big project which involves getting out lots of equipment that needs to be put away afterwards. Can you dedicate a small table to an ongoing jigsaw-puzzle project? Can you create a drawing area with pencils or crayons and a stack of paper?

Remember how babies don’t know how to calm down and get off to sleep, so you have to settle them right off to sleep? Kids recovering from Lyme disease may be so used to forcing themselves to keep going when they are exhausted that they forget to stop at bed time; soothing them off to sleep is your job, and it needs to begin about an hour before bed time.

If your child convalescing from Lyme is a teen, they may still benefit from your support in winding down for a decent night’s sleep. Make a plan with them for consistent evening routine which may include a relaxing bath, lying down listening to music, or some reading in bed. It is essential to avoid using any electronic gadgets for at least an hour before trying to get to sleep, and equally important not to be doing homework or any other involving mental stimulation as this reactivates the brain and inhibits sleep.

When things go badly wrong

13. Understand the real cause of behavioural issues

Some of the symptoms of Lyme disease are extraordinarily difficult to describe, and your young child will have no idea how to tell you about brain fog making them get into trouble for “not concentrating” at school. We have heard of some cases of children being mocked at school for sometimes using the wrong word or eating messily because of a paralysed face. They may try to tell you how desperate and wronged they feel, but they just might do it by kicking their little sister when they get home or by smashing a toy. Your empathy as a parent will have to rise to the level of a mind reader.

If the Lyme disease patient in your family is a child, remember that children who feel severely over-tired sometimes show it by having tantrums, crying or even behaving aggressively to other children. It may look as if their behaviour has generally regressed relative to their age.

In any case of trauma in a child resulting from their experience of having Lyme disease, ask your GP to organise counselling support from Child and Adolescent Mental Health Services (CAMHS). There is a long waiting list for this so do not delay making the request.

14. After Bacterial Meningitis or Bell’s Palsy

Children who suffer bells palsy (one-sided paralysis if the face) may take months or years to recover and in some cases there can be a permanent effect. This is a traumatic experience and they may benefit from counselling to process the emotions and fears they have as a result.

In very severe cases, Lyme disease can affect the brain causing bacterial meningitis. Your child will have had treatment in hospital if this was the case.

Bacterial meningitis can have a wide range of long-term or permanent effects. These can include sensory issues, such a hearing difficulties or problems with keeping the eyes on focus or tracking a line of text while reading. Severe problems with concentration and memory are very common. There may be trauma resulting from the stress which leads to anxiety or wetting themselves, or very difficult to understand behaviour. They can be loss of inhibition including sexually inappropriate behaviour or soiling. There is sometimes a loss of self control, with dramatic and sudden mood swings, angy outbursts or very aggressive behaviour towards other children.

If your child has problems of this kind we recommend reading about them on the Meningitis Research Foundation’s website. Their page on After Effects in Children has some very informative factsheets. We sometimes hear from parents whose children have some of these symptoms after Lyme disease even without having had acute meningitis. Lyme disease bacteria do enter the brain and can affect it even if the effect is not as severe as meningitis. There may be some information that is useful to you in these fact sheets even if your child did not have meningitis during Lyme disease.

PANS/PANDAS (Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) has also been linked to Lyme disease. The conditions cause dramatic – almost overnight – onset of neuropsychiatric symptoms including Obsessive Compulsive Disorder (OCD) and/or eating disorder, as well as uncontrollable emotions, irritability, anxiety and poor academic performance.

Although there is no conclusive evidential proof of a link between the two, it’s thought that sufferers may have a genetic predisposition for these syndromes, which are triggered by an environmental stressor, often an infection.

We hope you find this information useful. Although Lyme disease can be a serious and scary disease – especially for children – not all will suffer the serous effects we have covered in this blog. The best thing is to be prepared and take each day as it comes.

 ABOUT THE AUTHOR

Veronica Hughes was a member of the National Institute for Health and Care Excellence committee that researched and wrote the NICE Guideline for Lyme disease. She was also a member of the NICE Quality Standards Advisory Committee which defined the benchmarks for Lyme disease care on the NHS.

Veronica was a parent and carer to a child who suffered from Lyme disease and its after effects for twelve years before eventually making a full recovery..

 


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