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 :)
(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.
- 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 :)