I started to hear a repetitive banging noise coming from the living room, and I yelled out, “Stop the banging!” When it did not stop, I marched out to the living room. “I said to stop the banging! What are you doing?!” I yelled again, looking at Neil, whose body was half-off the couch with his legs stuck under the heavy coffee table, banging it. I thought perhaps he was acting out a scene from the movie or laughing in an exaggerated way, but that was before I saw his face. I pulled back the blanket that had been covering him, and then all at once it hit me. The violent convulsing, the profuse frothing at the mouth, the eyes rolling back in his head: He was having a seizure.
~
My mind likes to torture me by replaying the events of Neil’s first seizure in 2010. The above quote comes from the post I had written about it, and I still remember everything about that night. Mostly I remember the terror.
His subsequent seizures were the same. Always the violent convulsing, the eyes rolling back, the frothing at the mouth, the rigid limbs. Often the unmistakable thud of a body hitting the floor. I still hear it. Every time I hear a thud, even when Neil is not in the house, I freeze, my heart races, and my PTSD kicks in. The terror of his seizures is still with me, probably always will be.
The first medication we tried for him was not very effective. He continued to have seizures on a regular basis, like clockwork. Finally I convinced his elderly doctor to try a different anticonvulsant, and we got it right just the second time out. It worked. I still lived in fear of the seizures, but they appeared to be controlled, and I felt so fortunate.
Last summer marked two whole years that Neil, to the best of our knowledge, had not had a seizure. His neurologist ordered a 24-hour ambulatory EEG to see what the seizure activity in his brain now looked like. If it had decreased, we could begin the slow process of reducing the daily medication that, although a blessing, compromises his liver.
Neil was excited about the prospect of eventually not having to take pills every day, of people not having to remind him. And he is also concerned about liver damage since his grandfather died of liver cancer. We were optimistic about the EEG.
But the results indicated that the amount of seizure activity had not decreased. At all. In his frontal lobe he still experiences the frequent, random spiking that, according to his doctor, could cause him to have a seizure at any time. We were disappointed that the medication could not be reduced, but immensely grateful that it was doing its job, and doing it well.
~
This month marks three years that Neil has been seizure-free. Three years! We are so blessed that not only do we live during a time in history in which we are able, in many cases, to control seizures through medication, but also because we found one that works for Neil. I quickly remind myself of that whenever I lament that the epilepsy is still with us, still maintaining its unwelcome presence in his frontal lobe, continuing to compromise his executive function ability and his cognitive processing. It may always be this way. But at least we have the upper hand.
[image credit: Science Life]
Yes. I am so grateful that Neil has seizure control. It is, truly, a blessing. I’m sorry that he has to be on a toxic medication, but I guess that’s somewhat mitigated by its effectiveness. Can you do anything “alternative” to help support his liver? I remember reading about milk thistle being an important herbal for liver function, but that was a long time ago.
Woohoo!!! Three years!!! That’s great!!!
It must be so scary watching your child having seizures and constantly worrying about more. I’ve seen it before with a family member and it IS scary and worrying. I am SO glad that the medications are preventing more seizures and allowing him get on with his daily life. x
Thank you, Tanya, for your continual support and devotion of care and love to Neil, my grandson. And, thank you for reminding me of dates! 3 years that he has not had to suffer and endure those attacks, and the physical draining of the aftermath, in which his body slowly regrouped while he was in a stupor-like state. Yes, yes to the modern meds that allow so many of us humans to function well in our lives these days. Think of Neil’s suffering if this were 30 years ago! We will continue hope that the next EEG shows an improvement.
Love, Mom
I understand…my son had his first seizure in feb and then again in April. He is now on meds. Which have been keeping them at bay. My mind also flashes back to them. My son was 16 and now has to wait longer before he tries for a driving license. It good to hear I’m not alone.
i understand…my son had a febrile fever at 4 and his first Epileptic seizure Feb and in April. He is also on meds that have kept them at bay. He now has to wait to learn to drive for a year. But so glad his meds are working and hopefully he can get off them and have no more seizures.
Love.
While I am glad to hear that it has now been three years since Neil had his last seizure, I know that both of you are also eager to reduce that medication. My hope is that the spiking will decrease by his mid-20s. Just be patient and stay positive!