On Epilepsy

Our Snail is pretty hard done by, thanks universe.  It's not like she wasn't already unable to walk unaided, can't dress herself, is incontinent, is intellectually disabled, and has athetoid cerebral palsy to go with her pachygyria.  Oh no, that's not quite enough, thanks!  If you like, we can add in epilepsy to that charming mix.

Snail started having seizures when she was five, in a scary way.  Okay, I'm not actually sure there is a non-scary way to start having seizures.  So let's just say, in the regular old scary seizure way. She had three seizures one day and stopped breathing, thankfully only for a minute or so, then she came right out of it.  She had another one at the emergency room.  It was pretty clear after that, and an EEG, that she was having epileptic seizures.

Seizures are common in pachygyria, because of the malformations in the brain.  I remember reading on one medical site that pachygyria kids commonly had "intractable epilepsy."  Needless to say, that's not fabulous.  It means the seizures responds poorly to medication.

At first there weren't many.  She started out on Epilim, in liquid form, which we had to resort to many and varied tricks to get her to take!  Icecream and weet-bix were the favourites.

Little cutie having Epilim on her morning Weet Bix, 2006.

Her seizures were infrequent, and isolated.  The rest of the time she was how she normally seemed.  Here is one of the first videos we were taking, this is April, 2006.  It shows what we called the "jerky" seizures she would get. 

We'd take footage to show specialists, you can see here both the characteristic "writhing" of athetoid CP, and the jerky seizures that were the ones we saw most often at this stage.  Also here you can see I am feeding her, despite the fact she mostly she fed herself.  One of our other videos of that day actually shows her trying to hold the spoon, we were taking it as evidence she couldn't do it anymore!  She hardly feeds herself now, she seems far less coordinated than she was at 5 or 6.  Seizures at this stage were most commonly complex partial, or absence seizures.  She also had atonic seizures, like the first ones she had.

Slumped in her chair after a seizure at the beach

By age 7, seizures were more frequent.  She started getting  tonic clonic seizures, which scared us shitless at first. 

By age 9, seizures were taking over.  Her medications were increased.  First Frisium, then Topamax on top of the Epilim.

Now, she gets around a day a week with tonic clonic seizures, usually she has three or four over several hours, and sleeps/is unconscious in between them.  This will knock her around for a day or two afterwards, and often we have to go to hospital to administer midazolam.  She has had at least 7 admissions over the past year.  Sometimes they are overnight.

Snail also has many, many complex partial, absence, and, we think, myoclonic seizures (hard to pick as she has CP), she also gets tonic seizures sometimes that don't progress to the convulsion stage.


Blurry shot here, this is Snail getting up after lying down after a seizure, "helped" by her sister, Lolly, who just had to lie down too!  When Snail has a seizure, Lolly is darling and fetches her blankets and pillows.

Our poor Snail has just gradually lost herself.  Between the various seizures and the drugs, she became either like a zombie, with a glassy stare, not caring, or so slow and far from the bright cheerful child she was.  We have felt for years that what little she had was slowly whittled away.

We used to read together, play games, pick between two options, use our communication device, walk with some strength, get grumpy and demanding.  Now she isn't interested, the vast majority of the time.  Our girl has been stolen by the storms in her brain.  We might get a good day, or two, a week, and even then her capabilites aren't what they were when she was 5 and 6.

And we don't know what we can do about it.  Not until she is through puberty.  She has what's called intractable epilepsy.  Medications are unlikely to fix it, chances of being helped by meds decrease with each different type tried.

It sucks.