For parents of children with epilepsy, night time can be a constant worry.
It is generally when your child is alone and most vulnerable. Even if they are in the same room or even the same bed as you, fatigue takes over and you have to eventually give in to sleep.
The stress of knowing that your child is at the highest risk from SUDEP at night, as well as missed seizures that could lead to preventable deaths in epilepsy such as asphyxiation (suffocation), dysphagia (choking) or respiratory or cardiac arrest, can cause huge amounts of stress and anxiety. This ends up leading to constant sleep disturbances, which then has a knock on effect during the day and the vicious cycle goes round and round.
As a parent of a child with epilepsy it’s incredibly hard, you are not only physically tired but also mentally tired. You can try and wrap your child up in cotton wool and protect them but ultimately you can’t watch over them 24/7.
However, with just a few simple safeguarding measures, you can help protect them to your best ability and be ready for anything.
Keep a phone in your child’s bedroom at night
Whether you are a single parent family or a duel parent family it is important to keep a phone in your child’s bedroom at night.
If you wake to find that your child is having a prolonged or complicated seizure, or is suffering from any medical emergency, the first thing you need to do is call an ambulance.
You don’t want to be in a position where you are in the dilemma of having to leave your gravely ill child to find a phone and dial 999, this can cause critical minutes to be wasted and delay any help in arriving.
The ambulance call operator will be able to help keep you calm in a time that is confusing and frightening and talk you through ways to help your child until an ambulance arrives.
Keep emergency medication close to hand
It’s common for parents to keep emergency med’s safely stored away in a medicine cabinet and have supplies left at school or nursery. Some parents even have an emergency bag that they carry around with them during the day when they are out and about.
But do you keep your emergency med’s close to hand at night?
If you are faced with having to give emergency medication in the middle of the night, whether this is a rare or frequent occurrence, everything can become fuzzy and you will find it more difficult to function and think straight.
You want to be able to monitor your child closely so that you can give appropriate help and not have to hunt around the house for your emergency medication when you are tired and fearful for your child’s safety.
So the best place to keep emergency medication is close to hand somewhere safe in your child’s room.
If you are worried about your child getting into the emergency medication accidentally, then you can install a lock box or small safe that you can securely lock the medication away without the risk of them being able to get into it.
Check the expiry dates on your medication regularly and order replacements a month before the expiry date.
Make sure that you are up to date with your emergency protocol even if it is rarely used, so that if you do need to use it you know exactly how many minutes you need to wait before administering the emergency medication and how many minutes you need to wait before calling an ambulance.
Keep a written step by step plan with your emergency medication so that you and any family members or carers know exactly what to do in an emergency situation.
Make sure their bed is a safe environment
It’s sometimes hard to safeguard your children as they get older as they may rebel against safeguarding aides in a bid to be like their peers.
However it is so important to reduce the risks of nocturnal seizure accidents.
Bed guards are great at helping reduce injury or death caused from falling in-between the bed and getting stuck in awkward positions. Make sure they are the soft mesh guards or a hospital style bed, as wooden slatted guards could risk injury during a seizure if they hit their head or limbs against it. They may also get a limb stuck in the slats causing significant injury or loss of circulation to the limb. Bed guards can be removed and stored away if your child has friends visiting to save embarrassment, but can easily be put back on again at night.
Make sure that bedside units are either protected with a bed guard or have soft edges to reduce injury. Also make sure that whatever is kept on the bedside unit can’t cause injury during a seizure. This could be from wires to lamps or chargers that could pose a risk of choking or electrocution or any items that could accidentally be knocked over and break risking injury.
Bunk beds – These may be essential for a large family with reduced space and whilst they are fun to use for children with their siblings, there has been cases where children have had a seizure and their head has become trapped in the ladder causing the child to asphyxiate. If possible always ensure that the child’s feet are at the ladder end and use a bed guard to safeguard against the ladder causing injury or death.
Anti suffocation pillows and mattresses – These once upon a time used to be like sleeping on a rock and as thin as a pancake. But they have evolved over the past few years and now there is a range of anti suffocation pillows available that rival normal pillows but allow for better airflow allowing the user to breathe through the pillow if they are face down during a seizure. You can now also get anti suffocation mattresses which work in the same way as a pillow and help reduce the risk of accidental asphyxiation during a prolonged seizure.
Take a first aid and CPR course
I cant stress enough how important it is when caring for a child with a high risk condition such as epilepsy, that you know how to deal with a medical emergency.
Learning how to properly position a child for postural drainage during and post seizure, should your child be at an increased risk of aspiration (inhaling fluid from excess saliva or vomit onto the lungs) can help reduce the risk of a lung infection and sepsis. It can also help maintain an open airway to prevent lowered oxygen saturation’s.
Effective CPR can give your child the best chance of survival if they unexpectedly suffer a respiratory or cardiac arrest, but the only way to achieve this is by getting them onto the floor straight away and performing chest compression’s. The quicker you can start effective CPR the better their chances are of recovery.
If you are alone this may seem like an impossible task, but the 999 call handler will talk you through every step of the way and by placing the pillows or duvet on the floor next to the bed, it allows you to roll or pull them off the bed and creates a softer landing.
Ultimately the risk of death outweighs the risk of injury in these circumstances. And with the best will in the world, doing CPR on the bed will do absolutely nothing as you will not get a proper pump to the heart to get the blood circulating around the body. Sadly for every minute lost when CPR is not being carried out effectively, the chances of recovery diminish by 10%.
So by taking part in a professional course, you get the chance to practice these lifesaving skills until you feel confident and know exactly how to help your child as calmly and quickly as possible, increasing the chance of your child having a positive outcome.
Use a monitor that will alert to a medical emergency as well as a seizure
There are many systems available on the market ranging in price and what seizure types they can alert to.
Movement monitor’s may alert you to Tonic Clonic seizures but not preventable deaths in epilepsy.
By using a system that captures and constantly monitors their vital signs such as heart rate, you not only alert to seizures that cause a sudden rise to the heart rate but also alert to preventable deaths in epilepsy caused by cardiac issues, choking, seizure injury, suffocation and respiratory arrest. Ensuring your child is safeguarded properly and giving the whole family peace of mind and a peaceful nights sleep.
If you would like any more information on seizure safeguarding, please contact Kate on 01622 32 11 11 or firstname.lastname@example.org