So, your child has just got diagnosed with epilepsy and you are feeling so many emotions, I know I was last year, I'm sorry my friend and I hope I can support you.
If you haven't done already check out my blog post on practical steps to take after diagnosis here and pop over to my free support group for overwhelmed parents here for more free resources.
Now on to the practical things you need (as listed to me by by son's doctor) to keep your child safe and give you at least some peace of mind. These are affiliate links of things we actually have and use with our son. Going through these links doesn't cost you anything extra but gives me a few pennies (literally) to go towards supporting my little family :)
Video monitor/camera (even though I am sure you are watching them like a hawk!) This one links to your phone and records continuously whilst it is on. It has come in really handy when we have walked in mid seizure as we can use the footage to send to our epilepsy nurse and see how the seizure started.
Anti-suffocation pillow - this is recommended to help prevent SUDEP. It is breathable so therefore if your child has a seizure overnight and they are face down the pillow will still allow sufficient airflow.
If swimming is on the agenda this summer and your child has uncontrolled seizures then chat to your epilepsy nurse. My son has uncontrolled seizures still so we avoided swimming for about 9 months (as his first seizure was in water) but now we stay 1:1 with him at all times and he wears a buoyancy aid
My son suffers with night terrors as well as nocturnal seizures so we find a weighted blanket really helpful for him to help calm his nervous system. There are different weightings dependent on the child's size so please check which size is appropriate.
We have found this book really helpful when preparing my son (5) for an EEG and preparing his sister (2) for seeing her brother with the wires and backpack on for his 48hour one at home.
There are other things we use to help support our son but at the start the Camera and anti-suffocation pillow are the key ones so I will leave it there :)
There he was, our little boy, lying unresponsive on the bathroom floor. Colour drained from his face, eyes vacant… a parent’s worst nightmare.
THAT was the moment.
THAT moment will be etched into my brain forever and yet it was an otherwise, ordinary moment. A bath with his sister.
THAT moment was not meant to end up THIS way.
THAT moment was the start of all the interruptions since.
Our ordinary lives now touched by the OUT of the ordinary and no day will ever return to an ‘everyday’ as our life had been.
It's been a year today since THAT moment and so much has happened. Unfortunately he still does not have seizure control and trialling different treatment options every few months means a variety of side effects have come his way BUT our resilient little boy has done SO well.
One year on is a poignant day and one with a lot of emotion but also one with a lot of joy.
One year on I am starting the prelaunch for a business that has come from turning the pain of the last year into a new purpose. A purpose to help my son and other children who struggle with big emotions, a purpose to help overwhelmed parents and a purpose to be the change I want to see in the world.
If you want to be part of that change, the change that sees our children as a whole person, more than just the results they achieve. If you want to look after the mental wellbeing of our children then I would love you to follow along here and here and grab my freebie here.
A Box Full of Joy for children is just the beginning, there will be online courses, there will be boxes for adults and teens. Let's look out for each other and show kindness and compassion always.
Since I don't want others to feel that same helpless feeling I felt after my sons epilepsy diagnosis I have now made it my mission to help other parents whose children have just been diagnosed in my free Facebook group here.
I needed both emotional support for myself and practical tips and strategies to support my son so that's what you will find in there.
As a little taster of what you can find over there here are a few important steps to take just after your child has been diagnosed:
1. Get in touch with your epilepsy nurse - be proactive and keep pushing to get the support you need (YOU are your child's biggest and best advocate!)
2. Learn seizure first aid and get your family and friends to learn it too! (In my group you will find useful website links to learn seizure first aid and find support from charities such as Young Epilepsy, Epilepsy Research UK and Epilepsy Action.
3. Chat to those who take care of your child (school teachers, family friends) about your child's seizures and side effects of medication etc and write out a care plan to ensure you feel confident they are informed and can take care of your child. (I have copies of excellent editable care plans in my Facebook group that you can fill in and print off)
Hopefully those simple steps give some guidance in the turbulent and emotional time you may find yourself in right now and I look forward to connecting with you and supporting you over in the Facebook group 'Families of children with epilepsy: Help and hope for daily life'.
So after the first seizure two weeks later S had a two seizures in quick succession so he got taken in to hospital. The faint hope we were given that the first one could have just been a random occurrence had vanished and we were sat watching and waiting for answers.
Over his time in hospital he had an MRI and an EEG and they were able to diagnose him with focal epilepsy after seeing constant abnormal brain activity in the left temporal region of his brain. This made sense with the right side of his body being affected in all of his seizures with some stiffness and in the initial one some shaking. We were fortunate that we got the diagnosis so quickly and a follow up appointment was booked to discuss the route forward as well as a 48 hour EEG too.
We left the hospital a few days later faced with our 'new normal' and with a million questions spinning round in our head!
Our 'new normal' was overwhelming, it was scary, it was all the things I didn't want to have to face as a parent.
I didn't want my son to be in constant danger,
I didn't want my son to have to deal with his 'abnormal bran activity' in his every day life.
I spent hours and hours trawling the internet, looking for answers, researching and trying to find someone who understood what we were going through!
All I could do was pray and wait for the next appointment.
As a parent you want to do everything you can to protect your child from harm or hurt but at that moment, after that diagnosis, I felt helpless...
Let's go back to July 2020, our boy, S, had turned 4 the month before and after the craziness of lockdown times restrictions were easing and we had been enjoying some time with family and friends.
A normal day, a normal activity...interrupted. S was having a bath with our 1 year old daughter C and the unexpected happened. S has never really liked the bath but he was actually enjoying being in there with his sister, then suddenly he was quiet, his colour drained from his face and he was staring and unresponsive. My husband quickly removed him from the bath and we put him in the recovery position. I was panicking, we were trying to get him to respond but he wasn't.
The only other time I had seen the blueness that I saw in his face was when I saw my Grandad shortly after he had died.
I got C out of the bath and called 999. Seconds felt like minutes, minutes like hours, he was still unresponsive and rigid for about 3 minutes, 3 minutes may not sound like long but for me it felt like a lifetime. Seeing your son like that and not being able to do anything about it is scary, you feel totally and utterly helpless.
He came round confused and said he wanted to sleep. We carried him to bed and he was out like a light, that never normally happens, he's a 3 books and lots of songs kind of routine boy before bed! I just stayed with him, staring, making sure he was breathing.
Needless to say that moment, that unexpected seizure, was the start of many months of watching his every move and being on constant high alert, a state of fight or flight every moment of every day. When I'm with him I'm watching him, when I'm not I'm waiting for the phone to ring.
I'm writing this to help me process how our lives have changed since July, to raise awareness of the wide reaching impact of epilepsy and to hopefully help others to know they are not alone.
