They call it a seizure disorder…I call is SAS

This was written to support a fellow mum raising funds and awareness for epilepsy by collecting stories.

 

Day one it began. A tiny red-headed bundle with far away eyes stiffened and turned her head. Her hands were always fisted but sometimes they jerked as well. Medication was tried to no avail. She was moved from Special Care in a suburban hospital to the big paediatric hospital. The MRI showed damage to her brain. Several EEGs didn’t capture what were now thought to be seizures. Trust this monkey to stop fitting when we wanted to see one. Many medication changes and eight weeks of life in hospital and she came home.

We were dealing with many new and scary things but epilepsy was the scariest of all. She sometimes looked excited…but that was a seizure. It was so cute when she rolled her legs like she was riding a bike…seizure. On reflection, knowing what I know now, my baby was fitting most of the time. Alongside her diagnosis of severe quadriplegic cerebral palsy and being tube fed she was diagnosed with epilepsy. Refractory epilepsy. Neurology appointments. EEGs. Sleep study. Medications. I did, and still do, visit the chemist a lot (I think she could nearly have shares in the  pharmacists house!).

The first time I called an ambulance we were at a shopping centre. She had added to her repertoire of funky seizures by then but they usually stopped at the magic number. Five minutes was five too many but this time it went way beyond that. I watched her and willed her to stop. I gave breakthrough meds with no effect. I made the call and hoped they hurried. No one around me batted an eyelid. You see fits don’t look quite like they do on the tele. My kid’s brain was firing in all sorts of weird ways and she was only three.

Epilepsy has been the reason for all ambulance rides and all hospital stays apart from surgery. I dread any illness that may bring a fever. The whole season of summer is fraught with keeping her cool. And then came the urinary tract infections. After several cycles of a big seizure being followed by a UTI diagnosis the pattern became clear. Little fits would build over a week changing in their nature until an extended one called for a wee check. The little ones became a marker for a catheter test to be performed. And then there were the times when her cheekiness came to the fore. Seeing her staring into space I would grab my phone to start timing the absence only  to see a tiny grin creep onto her face. Faking a seizure! Hilarious…or at least she thought so.

With four different medications a few times a day I think she’d rattle if they weren’t all liquid! Her epilepsy isn’t controlled but we have learned to roll with it. Puberty is knocking on the door so there may be more rides on the rollercoaster to come but this marvellous kid copes well.

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