Complex epilepsy and our family

Posted by Sharon F on 21st November 2022 Additional Needs

When I first heard my 18 month old had ‘just’ epilepsy and that tests had confirmed she did not have other potentially more scary conditions, I tried to think positively. I envisaged a few seizures here or there, but it essentially being a common, manageable condition that many people live with.

It hasn’t taken that path for us, unfortunately. My little girl (Taz, a pseudonym) who is now 8, has a particularly complex epilepsy that dominates our family life.

She has a condition called Lennox Gastuat Syndrome. Our gorgeous girl has multiple seizure types, tonic clonics, atonic (drop seizures), focal seizures, absence seizures, tonic seizures, myoclonic seizures and atypical absence seizures. It’s rather a long list.

Watching your child go through this is incredibly painful.

I now truly understand the meaning of the word heartache, and how physical that can be.

We have had many, many ambulance trips and hospital admissions. Calling 999 is now routine for us, no longer newsworthy. If an ambulance is in our street, most of our neighbours will assume it’s for Taz. Complex epilepsy like this is a terrifying condition to live with.

It’s a beast that can jump out of the shadows at any time.

As someone with an existing anxiety disorder and who jumps at a toaster popping up, it’s a tough path to tread. That said, we have lots of happy times and in the course of living with this shapeshifting illness we have encountered so much kindness and support.

When Taz is not having seizures she loves to play, ride her unicorn, bounce, run and go swimming.

Taz has been through about 10 different drugs and currently takes 4, she has a vagus nerve stimulator and is on a medical ketogenic diet (have a google of those last two if you want to know more). Nothing works to stop her seizures.

One glimmer of hope is medical cannabis.

Three children in the UK have a prescription for this after it was legalised back in 2018 but there is currently major issues with doctors prescribing it. Please do spend a moment looking at https://endourpain.org to find out more.

I have to be a firm advocate for my daughter; in hospital when it comes to drugs that are being given, at school regarding her care and to social care to ensure we have the support she needs. It’s exhausting but I realise my privilege in being able to do this.

Taz’s resilience is incredible and watching her bounce back after episodes and get back on her unicorn astounds me every time - she’s just magic.

For more information on epilepsy visit: Home - Epilepsy Action