Epilepsy is Far from Benign; Sometimes, our Reality Bites
About three weeks ago, Logan had what we call a “bad seizure day” – as many of you already know, he has epilepsy and tends to have grand mal seizures as well as complex partial seizures.
This day, he clustered – which meant that we spent the whole day helping him recover from one seizure after another. Over a dozen seizures and several hours later we had given him his emergency meds and Logan was pretty much out for the count throughout the rest of the day.
Normally, when this happens, Logan takes a few days to get back to normal – he’ll be extra stumbly, his muscles more uncoordinated, or he might lose the bit of speech development he had achieved prior.
This time, Epilepsy took a bit of Logan with it
By the time he returned to school on Monday (this happened the preceding Thursday) he was still walking with a very noticeable limp, dragging his foot when he walked, and his weaker arm was still pulled up against his body. Since Logan also has mild cerebral palsy, these are all gross motor skills we had worked with him on so we understood that he might have some regression because of his seizures.
Normally this type of regression disappears over the following few days, and this time that wasn’t happening.
We’ve done tests, changed his medication around after the neurologist thought he might be having breakthrough seizures, and he is only now, almost three weeks later, starting to walk more normally again. His arm is still pulled up close to his body (a common enough thing from his days before recent therapy).
And that’s the deal, really, with epilepsy. And you never really hear about this unless you are involved with others within the epilepsy community. These more severe symptoms come with the reality of epilepsy.
And death, that can come from Epilepsy too. But you rarely hear about that either. SUDEP – Sudden Unexplained Death in Epilepsy – claims anywhere from 1 in 3000 to 1 in 300 people who have epilepsy every year, and can coincide with how severe their epilepsy is. (See further information on SUDEP at the Cure Epilespy site)
Epilepsy is far from Benign, it can be Deadly
If you aren’t familiar with Epilepsy, you might do a quick search and find out that generally, epilepsy is serious because what happens that leads to the seizure, what happens after the seizure (if someone falls and hits their head). You might even read on and find out that status epileptus (status, or unchanging, epilepsy) can be life-threatening.
But you have to dig to find out that many people with epilepsy, including kids like our Logan, can suffer more damage from repeated, frequent seizures of certain types. Grand Mal (or tonic-clonic) seizures as well as complex-partials (especially clusters, like Logan has) can both cause additional damage in rare circumstances. (See Epilepsy Information from the National Institute on Neurological Disorders and Stroke website or this more detailed information from The Epilepsy Therapy Project’s Facts & Myths Page).
In living with our reality, our epilepsy reality, we see that epilepsy can seem almost malicious, callous in its effects on the person who has epilepsy, and on the family.
Imagine your child not only dealing with ongoing seizures because their epilepsy can’t be controlled easily with medication … imagine watching them work hard to regain skills they originally gained through extensive therapy. That’s what keeps happening to Logan, and to countless others who have Epilepsy.
Your Turn: Have you dealt with epilepsy in your child? Are their seizures well-controlled? If you haven’t dealt with epilepsy, were you aware how insidious it can be?