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Living with Epilepsy

Living with Epilepsy

Two of my daughters have been diagnosed with epilepsy.

Elizabeth had her first seizure when she was just six months old. A very healthy and happy baby up until then, it came as a complete shock when she started having grand-mal seizures.

It was very scary to witness your little infant seizing- eyes rolling back in her head and going blue and limp, then shaking, foaming at the mouth and her whole body contracting in a terrible fashion.

I felt completely helpless as a mum.

I hate seizures.

After ED and specialist visits, EEGs and MRIs, she eventually got a diagnosis of “childhood epilepsy of unknown origin”.

Elizabeth is 10 years old now and thankfully she is pretty stable on her epilepsy meds. Her last bout of seizures were a year and a half ago when she was trial weaned off medication and then ramping back up to a therapeutic level.

I don’t know if she’ll ever be able to come off her meds. The doctors had hoped she would outgrow her “childhood seizures” but after we tried to wean her off drugs her seizures came back with a vengeance.

I mainly worry about her in her sleep as well as when she learns to drive, or what could happen if she fell and knocked her head badly during a seizure I don’t like to dwell on these “what ifs”.

My youngest daughter Brielle is 8 years old now and had her first seizure when she was 4.

Her seizures are more subtle involving gulping, drooling, vacant expression, loss of colour and usually some shaking.

Brielle was born very prematurely, she suffered a brain bleed and resulting Cerebral Palsy.

Hence the doctors tell us that her threshold for having seizures was lower than the average person- ie. it is not surprising that she’s developed a seizure disorder.

We are so thankful however that at the moment both girls are well-controlled on their daily medication.

I really do hate seizures and have seen more than I’d care to remember. We’re well used to emergency medications and care plans, and trips to the hospital. It helps to be a nurse mommy too.

So we are living with Epilepsy in our family.

These are our beautiful youngest two daughters on Halloween. Happy little rascals!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Rebecca Toal

Meet Our Blogger

Blessed, busy mum to four beautiful girls, the youngest with complex special needs due to extreme prematurity. We are always looking for ways to make Brielle happy and help her live life to the full! I love being a mum, getting outdoors with my family, baking, blogging and crafting

View Rebecca’s Profile

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