Where Advocacy, Special Needs Parenting, & Life Collide
Our Epilepsy Reality Bites – Regression and Worry for Logan
Epilepsy is Far from Benign; Sometimes, our Reality Bites
You can’t tell easily – but as happy as Logan is in this picture (and I adore his toothless grin!) his weak arm is pulled up and his weaker leg is bent over the midline as he’s trying to run. Epilepsy might have hurt his gross motor skills, but not his spirit! 
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?
Katrina Moody
Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
@KatrinaMoody
Wife; Mom to 3 guys w/ARS, autism, epilepsy & awesomeness; Advocate. Writer, Graphic Designer, Wordpress addict, social media nut. Site: http://katsmedia.com &
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you are right most people don’t know about the effects of a seizure and certainly not that it can be fatal i did know about the physical effects but i did not know about the fatalities until recently hope logan does improve soon
Thanks, as always, for your support Muttley! Thanks for commenting – I wondered how many people realized that epilepsy could have more severe side effects (though calling death a side effect is like calling a kitten a lion). Thanks, my friend!
Kat this has been something that I have been thinking a lot about lately – how dangerous epilepsy is and how little people seem to realise this. My son’s seizures are life threatening. I have had to resuscitate him countless times, twice at the side of the road. It is terrifying. I think so much about epilepsy focuses on how you can still live your life with epilepsy, how you can work, go to school etc and that’s great and positive but it gives a false impression – that epilepsy is not that serious. You try telling mothers and fathers who have lost children to SUDEP that it’s not serious. You try telling that to parents who have seen their child regress, lose basic skills such as the ability to talk and walk through epilepsy. My son lost his ability to swallow and is tube fed now (though whether this was the epilepsy or the IV drugs that caused it I’m not sure). Sorry I realise I am rambling but this angers and frustrates me so much. Sorry to hear that Logan regressed after his recent seizure and I hope he makes a full recovery soon. xxx
Thanks Em – It is frustrating. I’ve had to give Logan CPR and do rescue breathing … I lost count of the number of times over the years. Most people see the day to day dealing with Epilepsy, and they miss the days where everything becomes life-threatening as a result! I do think that this November for Epilepsy Awareness Month I want to share more of this reality with the Cafe readers – even if you can be positive about epilepsy you must also be realistic. Thanks again for sharing your thoughts with me and the Cafe readers, Em … I’m sorry to hear about your son’s loss of swallow ability – I know Logan tends to lose oral muscle tone during many of his seizures – and he will drool so much more as a result. {{hugs}} I pray your son recovers, regardless of what caused it – it’s so hard when your child regresses!
Kat,
As you know, we are very new to epilepsy. I have learned, well, Lizze and I have both learned a great deal from you. Thank you for sharing your story and as always, you and yours are in our thoughts and prayers.
You know know how much we appreciate that Rob! You guys stay in our prayers all the time these days! {hugs}
Thinking of you and your sweet boy! Hugs and positive thoughts from afar…
(dofollow)
XXX
Leah
Leah Kelley recently posted..Be the Change… Vectors of Autism at the SFU Alone Together Film Festival
Hi Katrina! I highly appreciate the share and I admire you for the strength and courage that you constantly demonstrate. More Power!
That is a very interesting and valuable blog, Katrina.
I am one of the millions who only know of Epilepsy from what we see and read about it.
I feel ashamed for my unthinking ignorance, for while I have always assumed that it is something affecting the brain’s normal functions that causes it, I have never gone that step further in my mind to acknowledge that such effects could be damaging the tissues rather than just having a temporary effect.
My ignorance has become glaring to me, now that I am aware of what I should have deduced myself, if I had really thought about it.
That the damage done can be permanent to the tissues involved, causing regression, loss of function and, potentially death.
I am truly sorry as a member of the great ignorant majority that I have never really thought about it.
My sympathy is with you all, and well done for making myself – and hopefully many others aware of the full, fell impact of this condition.
John.