Life with Epilepsy
One of the things I love is coming to my blog and seeing which of my posts are popular. Most of them are our Epilepsy posts. When I began blogging, I didn’t intend to write about that aspect of our lives but I wanted others to not feel so alone in this journey that we’ve lived with now for generations.
I’m lucky. I have generations of family who’ve had Epilepsy, who I can relate with. Not everyone has that. Most of the families I’m in contact with daily don’t have anyone they know that has Epilepsy and they often have no knowledge of Epilepsy itself.
Now it’s not lucky that we’ve had to deal with seizures for generations on generations. This is a mean disorder that holds no kindness to it’s victims. But I have history to compare to, especially for myself and my children. I know what I’ve lived with. I know what they’ve lived with and how it affects each of us.
I have 3 children with Epilepsy. I’ve been to every appointment with them on this. I’ve asked questions, had medications changed and adjusted, address dietary issues, made thorough notes about each type of seizure we all have. I’ve taken on this part of parenting willingly because if I didn’t, who was going to? But more than that, God equipped me to do this. He knew when He chose me I could do it, even when I questioned.
I’ve been through the ups and downs of this disorder as a Mother. I’ve explained as much as I can to my children when they ask why this happens to them or why they need medications, or why they need an MRI or an EEG, why we have to stay at the hospital this week. This is our life. This is what we do. Epilepsy isn’t a choice but it is our life.
When you’re feeling down about Epilepsy, remember to look up, to pray, to allow yourself peace and grace as a parent. Don’t beat yourself up. There’s nothing we can do to change the fact we have this disorder, nothing we can do to change it. We accept it and move on to help our children deal with their days better.
It’s been a while since I posted about Epilepsy. It’s something I try to ignore some days but it’s always there. When I least expect it, it will rear it’s ugly head and remind me it’s still here lurking in the sidelines. And then I remember there are others like us who also deal with this. I pray our blog helps you to deal with the day to day and know you are not alone.
This post is part of the Epilepsy Blog Relay™ which will run from . Follow along and add comments to posts that inspire you!
My oldest, thankfully, does not have Epilepsy, though he does have struggles of his own. He’s allergic to penicyllin and mold. He struggles educationally. He has sensory issues.
My second born, my daughter, was the first of my children to have Epilepsy. She was 3 months old when she had her first seizure, 2 weeks following her vaccine series. She continued to have tonic clonic, absence and complex partial seizures until she was 5. At five she stopped having seizures and began having migraines instead. At 14, she’s been seizure free for 9 years though she still has migraines occasionally.
My third child, my second daughter, began having seizures at 4 months, 2 weeks after having her vaccine series as well. She also has tonic clonic, absence and complex partial episodes. She is now 9 and has not outgrown her seizures. As the years pass, our hope becomes less that she will outgrow them. She has yearly EEG’s which show nothing and she’s on Lamictal currently after having allergies to everything we tried in the past. She is mildly delayed due to an allergic reaction to Trileptal when she was an infant.
My fourth child, my youngest son, has a different condition. He official diagnoses is Involuntary Breath Holding Spells that trigger Epileptic Seizure. Involuntary Breath Holding is a common childhood disorder which becomes dangerous when seizures that follow last longer than the average 30 seconds to 2 minutes. For my son, the seizures last anywhere from 10-20 minutes. 20 minutes is the longest we’ve allowed them to go without stopping them with emergency diastat medication.
Epilepsy brings many challenges in life. I went from being the person that seizes, to being the person who watches their child seize. Our family is rare in that we have 5 known directly descending generations with Epilepsy beginning with my great-grandfather down to my children. My children are the first generation since my grandfather’s generation to have multiple siblings with Epilepsy.
Being a person who has seizures is hard. Being a Mother of children who have seizures is harder. I do not know what our days will bring as Epilepsy is not a predictable disorder. Even though my oldest is not currently having seizures, it does not mean she never will again. It’s a disorder we are always watching for, looking for even the smallest of events that may be a heads up for a larger event.
I don’t wish our life on anyone and yet I know our life could be worse. I’ve been lucky in that we’ve never had more than one of my children (or myself) seize on the same day. I call us blessed because I know this could be worse. I see it in the Neurologist office and in my Epilepsy groups online every day.
I began blogging in 2009 and I wasn’t sure what this blog would be about. It didn’t take long for me to find my purpose here though. Sharing our life and our story about Epilepsy, our day to day challenges, things we go through in an effort to helps others who, like us, struggle to understand and live with this disorder.
When I began blogging there were not many Epilepsy Mom bloggers. I can understand why. This isn’t an easy thing to share. When our families are seizing, then we’d just rather it go away and we’d rather pretend we’re normal and it doesn’t exist. But the truth is, it does exist. It doesn’t go away. It’s always there, even when it’s not active.
There’s always the fear. The fear that the day will end with a seizure or the morning will begin with one. The fear that a seizure will happen in their sleep and you’ll wake to find them not breathing the next morning. The fear that you’ll have a day full of too much excitement that leads to a week of seizures that are unstoppable. The fear of Status Epilepticus and SUDEP. The fear never goes away.
And you never forget. You never forget how your child or your loved one looks laying lifeless and out of control. You never forget the feeling of helplessness you as a parent feels. You never forget the confusion a seizure creates. And you definitely never forget the thankfulness you feel when your child or your loved on wakes up and comes around from the seizure’s effects.
Epilepsy life is hard. It’s not a life any of us would choose but it’s one that we are forced to live every day. We deal with the not knowing, finding hope and strength in whatever we can to get through it. The Epilepsy community is a tight nit one because we each understand the challenges and triumphs of living with Epilepsy.
Epilepsy is our life and you can read more about it and how we deal with our day to day through the many other Epilepsy posts we have shared on our blog. I promise there will be many more posts to come as we continue to share and work towards helping others understand what living with Epilepsy is like. I hope our blog encourages you to share your own Epilepsy story with others. Advocacy and Education for Epilepsy is one of the best things we can do for ourselves and our families.
May each of you be blessed,
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Sometimes God alerts us to dangers that may be happening around us. I’m always thankful for these little nudges that let me know when I need to pay extra attention. Especially when these little instances have to do with my children.
Last night, I tucked my kids into bed. I said their prayers with them and kissed them. Then I went to take my bath as usual. Shortly after, I began to relax, I heard Laycie cough.
It was an unusual thing, as once she’s out, she’s usually out for the night. But last night, I just felt different and I knew I should check on her. So I did.
She was asleep in her bed, snuggled in but something told me to wake her anyways. When I did I found she had the paths of tears coming from both of her sweet eyes. As she opened her eyes to look at me, I saw her eyes were red.
She had no idea why I was waking her. She didn’t know she had coughed. She didn’t realize she had been crying. I asked was she okay and she responded but her answer didn’t make sense. I’m not sure if she had been dreaming or if this incident was seizure related.
This is the life of Epilepsy. Outwardly, you see a child who appears normal. A child who plays with her siblings, sings, jumps, runs like normal. But beneath the surface the normal child ends.
From my experience, I have no doubt this was seizure activity for Laycie. Her emotions, her responses on waking, her movements all point to something being “off” for her. It wasn’t a seizure itself but activity in the brain that can lead to a seizure if not recognized and paid attention to.
Sometimes we miss these small signs that the Monster is nearby. We don’t always catch those little things before the big ones happen but they are important to learn and to recognize. By catching her small responses, I am able to snuggle with her to calm her. I am able to see to it that she rests a little more, sleeps in and takes a nap if she needs it the next day.
Sometimes just simply laying beside her and holding her can help her drift into a deep sleep that allows her tiny self to reset. This simple reset can help keep her from having a major seizure and that’s always the goal. If she’s restless, we can find a relaxing activity which for Laycie is usually just being held and shown love from Mommy. I can also apply our essential oils, either our frankincense roll-on or our lavender, to relax her and help her drift into sleep again. Just these simple things can help.
There have been so many nights that I have laid awake in the last 14 years as a seizure Mom simply listening to my children breath. There have been so many days when I have watched my children like a hawk judging what for us is seizure activity and what isn’t as well as what’s different for this child versus their sibling. Epilepsy manifests into each individual person differently so it’s important to learn these small points, as well as the larger triggers for yourself or your child. Learning their personal quirks and triggers can help you to stop the onset of a major epileptic event for that individual.
And always pay attention to those little God nudges. Don’t second guess His reasons to alert you. Go seek out what it is He wishes to make known to you. You simply never know when one of those nudges may save your life or that of someone else you love.
It’s been a crazy week… and it’s not slowing down.
Last week was a mambo jumbo of activities for us making it one hectic week. I’m proud to say we survived it, though not without some issues. Still looking back, I think how much worse our week could have been but thankfully it wasn’t as bad as I originally thought it was.
Mid-week we had our MUSC check-up with Neurology for Laycie and Jackson. Laycie had a Pulmonary Appointment this day as well, but it was cancelled since she had not had her sleep study yet. Our Neurology appointment was scheduled together for her and Jack though and it went amazingly well.
I must stop here to say that I absolutely, totally and completely LOVE our neuro and the MUSC Children’s Pediatric Neurology Unit. We have been using this same office for 34 years now, as they were also my pediatric neurology team as well, though the doctors have since changed to be replaced by new neurologists. As a parent, we have been using this office for 11 years and though we’ve had ups and downs with care, changed neuro’s a few times, we have always had a wonderful experience with their office. Very rarely do we run into issue with them and that makes such a wonderful difference. The staff truly cares.
That said, we went into our appointment and I was ready to go to bat with my thoughts and ideals but that wasn’t needed at all! The doctor brought to point many of my thoughts before I could even mention them. He had recently cared for a family who’s children have severe issues with Breath Holding Spells with seizure, much like Jack suffers from. He saw my urgency for treatment of Jackson’s disorder and the same fears in this family that I have for my son and for Laycie who also has Epilepsy. He agreed that most likely Jackson’s Breath Holding Spells are a trigger for Epilepsy in him and he also agreed to continue treatment as needed, instead of removing medications.
Talk about God’s blessings! I completely felt them on this day! I left this appointment feeling like we finally had so many answers and a treatment plan that truly fit to us!
Our crazy day wasn’t over though, as that night we had a sleep study for Laycie at MUSC. The study was to check her for sleeping disorders and also do an updated EEG for our neuro. The study was from 7pm-6am and I feel she did really well. Some of the wiring was upsetting for her but she managed through it all. Daddy was there to pick us up bright and early the next day so we could head home. We are still waiting the results of this study to see how she is doing.
Later on Thursday, Laycie had two partial complex seizures happen unexpectedly. The toil of the busy day before hit her like a freight train. These are the first seizures we have noticed since her last breakthroughs last June and I feel they were directly related to the extra excitement for the week. There were no signs of them coming and I am hoping that her EEG showed some activity for the doctor the night before so that he can treat her appropriately.
Since Thursday, things have been busy at home. The week was relaxed. Sunday was a lazy day, with rain keeping us from getting much done.
Today, I’ve spent mostly on the phone. I had some business and personal calls to make, caught up with email, and just got things in order for our medical appointments. I did some odds and ends I needed to get done as well.
Tomorrow, Jackson has his first Hemotology appointment at MUSC. He frequently bleeds a lot from even the smallest of bumps so we are taking him in to see if there is some sort of issue. He bruises extremely easy from the smallest of bumps. If you didn’t know better you’d seriously think my sweet baby boy was abused and this concerns me greatly. So while we were at our Neurology appointment, the neuro referred us over to get him looked at.
So this has been our busy week update. So much is going on that it’s hard to keep up but we are managing. Please keep us in prayer for all of the issues above.