Navigating sleep coaching for children with epilepsy

As we are in Epilepsy week, I decided to look at a topic that affects many parents: epilepsy and its impact on sleep in babies and children. If you are the parent of a newly diagnosed child with epilepsy, then here is a good place to start.

Firstly, let's look at epilepsy itself. Epilepsy is a neurological disorder characterised by recurrent seizures. These seizures can vary in type and severity, ranging from subtle moments of staring to full-body convulsions. It's essential to understand that epilepsy can manifest differently in each child, making individualised care and support vital.

Diagnosing epilepsy involves a comprehensive evaluation by healthcare professionals, including medical history, neurological exams, and sometimes imaging tests such as MRI or EEG. While receiving an epilepsy diagnosis for your child can be daunting, it's the first step towards understanding and managing their condition effectively.

Let’s look at how epilepsy intersects with sleep. As we know, sleep plays a vital role in the well-being of all children, but for those with epilepsy, it can give parents very unique challenges. Seizures can disrupt sleep patterns, leading to fragmented sleep, poor consolidated sleep and increased daytime sleepiness. Additionally, certain medications used to manage epilepsy may affect sleep quality or cause drowsiness. These medications may also cause prolongedsleep onset, which can affect overall sleep quality. Sleep deprivation can be a common trigger for seizures, and in some types of epilepsy, seizures are much more common during sleep.

It's widely recognised that parents of children with epilepsy don’t get enough sleep, only getting 4hrs of sleep per night on average. This is predominantly due to multiple wakings to check on their child’s welfare. Therefore we can see that being able to manage the child’s sleep should lead to improved parental sleep. If you or your partner are having problems with your own sleep, it’s important that you seek advice from your healthcare provider or certified adult sleep coach.

As a sleep coach and lactation consultant, my approach to every family is rooted in empathy and understanding. I recognise that every child is unique, and their sleep needs must be addressed with compassion and patience, especially when epilepsy is involved. As a paediatric nurse, I also recognise that their epilepsy doesn’t define them. From a sleep coach perspective, this means that the initial approach to sleep coaching isn’t a million miles removed from a child without epilepsy.

Here are some tips for supporting your child's sleep while navigating epilepsy:

1.   Create a soothing bedtime routine: Establishing a calming bedtime routinecan help signal to your child that it's time to wind down and prepare forsleep. Incorporate activities such as gentle massage, reading a book, orlistening to soft music to create a relaxing atmosphere.

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2. Optimise sleep environment: Ensure your child's sleep environment is conducive to restful sleep. Keep the room dark, quiet, and at a comfortable temperature. Consider using white noise or soothing sounds to mask any disruptive noises that may trigger seizures.

3. Monitor for seizures during sleep: Some children with epilepsy experience seizures primarily during sleep. Invest in a reliable baby monitor with video and sound capabilities to keep an eye on your child during the night. This can provide peace of mind and enable you to respond promptly if a seizure occurs. Your paediatrician/neurologist will be able to advise if you need this, and which system to purchase.

4. Consult with healthcare professionals: Work closely with your child's healthcare team, including paediatricians, neurologists, and sleep specialists. They can offer invaluable guidance and support tailored to your child's unique needs, including adjustments to medication regimes or sleep strategies.

5. Practice self-care: Caring for a child with epilepsy can be emotionally and physically demanding. Remember to prioritise self-care and seek support from family, friends, or support groups. Taking care of yourself enables you to better support your child's needs.

If the above tips don’t help you or your child- it’s worth speaking with your healthcare provider or neurologist to rule out any underlying causes. A useful website for you to refer to is the Epilepsy Foundation, as they have excellent guidance and resources.

If you have any questions or would like to explore sleep coaching services further, please don't hesitate to get in touch. Lullabies is here to support you on your parenting journey every step of the way, whatever that looks like for you.

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