November is epilepsy awareness month.
As I have said previously - if you or someone you live with has epilepsy you’ll probably feel like everyday is epilepsy awareness day.
I remember as a child learning about epilepsy. The prospect of it absolutely terrified me. I remember being taught first aid for if you encounter someone having a seizure.
I lived in fear of witnessing someone having a seizure and being the one responsible for keeping them safe until an ambulance came.
To outsiders, the word “seizure” is absolutely terrifying.
When your child has literally 100s of seizures a day it can feel quite normal to say “oh she can’t talk to you right now she’s just having a little seizure”.
Often when I say these words the person will recoil in horror and I’ll say oh no please don’t worry, she has lots of these ones, they’re only little ones and she’ll be fine again in a second. It sort of becomes your daily norm.
The prolonged seizures do of course still terrify me.
I am thrilled to say that since starting a hospital prescribed ketogenic diet almost 2 years ago to day, Amy hasn’t required ANY rescue medication. There was once a time where a week wouldn’t pass without us needing to administer rescue medications so this is huge progress.
Right now for us epilepsy looks like: 2 different anticonvulsants twice a day, a rescue med to break up cluster cycles, a rescue med to stop a prolonged seizure, two blood checks a day for glucose and ketones, a rescue treatment for low glucose/high ketones, regular full blood counts and clinics at the city hospital with dieticians and neurologists, making a daily 24 hour batch of keto feed to be fed into the bowel via feeding pump 24/7, contact with a local epilepsy nurse and pediatrician, close monitoring of seizure types and length of time.
It might sound a lot, but compared to a few years ago we are all so much more knowledgeable in preventing and treating any issues that can arise as a result of epilepsy.
I still don’t fully understand the ketogenic diet and how it works.
I have sort of worked out that changing how the body creates energy (from fat instead of carbs) that this somehow rejigs things in the brain? Whatever the science behind it is - I am grateful for it, and it works for us.
In spite of the keto diet Amy still has 100s of seizures a day but thankfully these are partial/focal seizures or absences. Triggers for Amy include gastro issues, mood, tiredness, feeling unwell, many things really.
Whilst currently well controlled, it’s still an unpredictable aspect of Amy’s diagnosis and for us, currently comes second to chest/respiratory issues in terms of most difficult condition to manage.
I was told in our last clinic that Amy will need to be weaned off the keto diet in 6 months. I am terrified at the prospect. I am hoping that somehow her system has had a bit of a reset and that the seizures will stay how they are and not worsen.
The thought of constant tonic clonic seizures terrifies me.
I try not to think of SUDEP (sudden unexpected death in epilepsy) and the many other awful things epilepsy can entail. But without keto or our amazing team at RMCH I am very nervous.
If the wean goes terribly there is a chance we can return to keto, but generally they don’t like people to be on it fully for more than 2 years.
Epilepsy has taken a lot from us. It has hindered development for Amy and did cause a regression too. She didn’t have seizures until around 5 years ago.
I noticed a sudden change in her movements and behaviour. I had asked many times for an EEG to be told what she was doing didn’t sound like “typical” seizure behaviour. But parents know.
We have a gut instinct when things aren’t right, and I'd like to think by now I have acquired an almost extra sense for these things. When you’re around someone 24/7 you tend to notice even the smallest things.
One morning I walked into Amy’s room to find her blue, foaming at the mouth, and convulsing. That moment will stay with me for the rest of my life. I think about it every single day.
I was no longer under any doubt that she was having seizures.
The EEG was done, everything was confirmed, and the awful process of finding the right meds commenced. The meds can be brutal. They affect each person differently so finding the right dose and type of medicine can take a very long time.
The side effects were absolutely horrendous for a long time. There were times when a dose increase meant that for months at a time Amy would be extremely moody and distressed and I would be calling the doctors crying my eyes out asking when it would get better.
How she has suffered whilst we tried to find the right treatment plan was harrowing at times. I am so proud of what she has managed to overcome and how she perseveres daily to not let these things impact her quality of life.
I hate epilepsy everyday. With a vengeance.
I see what other families like ours go through with it, many much worse than us. And my heart aches.
I am so grateful to the keto team at Royal Manchester Children’s Hospital. We have never felt so reassured, understood, and happy with a team.
I always wish every facet of our lives were as good as our experience with them. You get the feeling that you are working together for the same outcome. Not working against them, not having to fight your corner, not having to wait on long waiting lists or beg for funding.
Help seems to always be there by email or phone and always quickly responded to. When you’re helping someone manage a lifelong and sometimes debilitating health condition, this is precisely what you need in your life.
I live in hope for advancements in medical technology to continue, be it laser treatment, VNS surgery, cannabis oil, new medications, anything to make life easier for those living with epilepsy every day.
I don’t yet know how Amy’s epilepsy future looks, I am nervous, but I am also hopeful and determined.