battle with Epilepsy

Laycie’s Story {Epilepsy Awareness}

November 9, 2013 by Dana

I’m sitting at home today, watching Laycie, my 5 year old daughter, play outside with her big brother. Sometimes I simply cannot believe how much she has grown or how far she has come in 5 short years. She is one of the many things I am thankful for.

It’s hard to believe that at 4 months old, my perfect little girl began having seizures. At 4 1/2 months, Laycie’s medicine failed her and she went Status Epilepticus. I will never forget that day.

Laycie was so tiny. She was the smallest baby I gave birth to. She was born via c-section on April 11, 2008. It was a beautiful day and the surgery went wonderfully. I had a healthy, precious little girl.

Her first few months went smoothly. She increased in size and had a healthy appetite. The only thing wrong was that Laycie appeared a little delayed in rolling but it wasn’t anything I was worried about at the time.

It was hard to get an appointment with a good pediatrician in the Upstate of SC, so by the time I was able to get Laycie in for her first series of vaccines she was 3 1/2 months of age. At that time, I had read a lot on the vaccines and I wasn’t sure I even wanted her to have them but following the tradition of society, I went against my instincts to have her vaccinated.

Two weeks later, my sweet girl had her first seizure and though I know her Epilepsy isn’t caused by the vaccines, I have been told it can be triggered by them. Laycie began seeing a neurologist in Greenville Children’s Hospital who started her on Keppra. It seemed to work wonderfully for her. Her seizures were controlled and she was “back to normal”.

Two weeks later, her seizures hit so quickly and unexpectedly that the day still feels like a nightmare. Laycie was in a steady set of seizures for 13 hours straight. She had 9 tonic clonics that day; I lost count of the amount of partials she was having. I still question if any damage was done from her lack of oxygen and the amount of seizures she experienced in that one period of time but her doctors assure me there have been no major after effects. We have not experienced a day like that since but it’s still a nightmare and a huge fear for me.

As I watched Laycie lay in her crib at Greenville Children’s Hospital, I remember praying to God for him to not take my baby girl. I remember asking for him to stop the seizures and her suffering. My heart aches just thinking about those hours that I sat watching wondering how this was going to affect my baby girl, wondering if it would ever stop. I have never felt relief like I did at the end of that 13 hours span when my baby girl opened her loving blue eyes and cried for me.

Laycie is 5 now. We are still battling this monster called Epilepsy. She doesn’t let it get her down though. She’s just as strong today as she was at 4 1/2 months, always blessing her Momma and her loved ones.

We are lucky. My heart aches when I read of other Momma’s who watch their sweet babies suffer with seizures. The unknown becoming their worst reality and wondering when the next episode will strike.

I’ve known at least two beautiful children who God has called home from this disorder, only online but their stories none-the-less are carried daily in my heart. I ache for their kind Momma’s and know it just as easily could have been me in their shoes, mourning the loss of my sweet babies. I can only imagine their pain and I pray every day to never know it, to never share in it and that this monster will just go away.

It’s still here, lurking and waiting to strike again. I can build hope on the days when my Laycie is playing normally outside and pretend but I can never let go of the thought that she could just as easily fall prey to the Monster again, rendering her body useless while she fights the seizures attacking her brain.

Have Faith, Momma’s – Faith that God is with our babies, that He carries them within His arms through every battle they face with this Monster. Have Faith that He has given them each a purpose on this Earth and He will not call them home before their time. Have Faith that in the bigger plan, these seizures have purpose though we cannot see what they are at this time.

Have Hope, Momma’s – Hope that some day soon there will be a cure or at least an end to the battle with this Monster. Have Hope that our children will some day be blessed to know what it is to live a normal life, even while we watch in wait for the ever-lurking Monster called Epilepsy.

The Epilepsy Monster Strikes Again {Epilepsy Awareness}

June 12, 2013 by Dana

Days at Luv’N Lambert Life appear fairly normal. There is no general chaos or drama unless it’s caused by the outside world. We go about our days, living and enjoying life with little issue.

But there is a hidden danger that lurks here every day. It strikes when I least expect it. It completely wipes my child out and hinders my days and weeks.

Epilepsy is our hidden danger. You don’t see it physically in my children on a daily basis but it’s there, lurking, waiting to strike when I let my guard down and think everything is ok.

Yesterday morning it hit us again.

Monday night went as planned: dinner, kids baths, kids to bed, get things laid out for therapy on Tuesday. It’s our routine. We do it every week. No problems.

The kids went to bed. They were staying over at Grandma’s house. Laycie, as always, slept snuggled next to Jackson and Grandma in Grandma’s bed. All was well and everyone slept nicely. I slept at our house, not 100 yards away.

Morning came and my phone buzzed heavily. I honestly thought it was my alarm telling me to get up and get ready for therapy. It wasn’t. The phone said “Mom”. My heart dropped as I answered it. All she said was, “Get over here NOW!” My mind raced to think “which one of my babies is hurt. Oh God, please let everything be ok!”

I knew better. I knew something was wrong. I ran into the house and yelled to my Momma, “where are you, what’s wrong”. I could hear her calling Laycie by name. It was all like a terrible nightmare.

I walked into her room to see my baby, my tiny sweet precious girl laying with her legs straight down, arms pulled stiffly up to her body. Her lips were grey, blue. Foam was pouring out of her mouth. Vomit mixed in.

She was seizing and there was nothing I could do. I remember saying, “is she ok? Is she breathing?” No, at that point she wasn’t. Her heart was beating, her breathing had stopped and she was stuck in the midst of this seizure that we couldn’t stop.

Poor sweet Jackson was laid at the end of the bed just looking around. He had no idea what was going on, as this is his first experience with his sister’s Epilepsy. He looked from me, to sissy to Grandma and wondered why no one picked him up though he was smiling sweetly.

Laycie was our only concern at that moment. I had left my phone at the house, so I grabbed my Mom’s. Thank God it was charged. I dialed 911. A man answered. I left the room, my baby with my Mother and ran to get my Mother-in-law, all while telling this kind man the details of our emergency.

On the way, I told Winston and Emmalee to get up. I remember telling Emma, “your sister is sick, get Jax now”. My sweet strong, Emmalee who went through all of this so many times herself is now on the other side, watching her sister suffer. And my rock Winston who I could not have made it through without.

I remember telling the 911 dispatcher my address while running across the yard to my Mother-in-laws. I remember telling him my number. I remember telling him “my 5 year old is having a seizure, please God hurry” “she isn’t breathing, she’s blue, she’s foaming”. I am quite sure he thought I had probably lost my mind by this point.

I remember standing in front of my Mother-in-laws door thinking “should I knock or just walk in”. I knocked, then I reached for the handle. “Is it locked, oh please don’t let it be locked”. As I reached for the knob I could hear the dogs barking so I knew she’d be getting up to see what was wrong. I called for her.

She was coming down the hall and asked “what’s wrong”. I told her “Laycie is having a seizure. I need you to come now”. I turned around, left and ran back to my baby. She followed.

I ran back into the house and updated the dispatcher on Laycie’s condition. She was still seizing. Her body jerking uncontrollably while my Mom talked to her, trying to console her. She was still pale. We rolled her back onto her side. She was so still but she was breathing again. I remember taking a breath at that point and thinking “thank you God, it’s almost over. Please don’t let her go into a another one.”

The dispatcher was still on the phone. At some point I ran to our drive to see if the first responder was arriving. I remember him telling me the fire truck would come first. At this point they weren’t there.

I ran back inside. Laycie was still but not seizing. I ran back out and the fire truck was pulling in. The dispatcher hung up. I waved the fireman over. I told him she was inside. I led him to her and let him work. I could hear my Mother-in-law saying “the ambulance is here”. I heard her telling me “you need to get dressed so you can ride with her to the hospital”. I ran out, waved the ambulance to the back. I ran to get dressed. I grabbed my purse, my phone, threw on clothes, grabbed Laycie a dress and ran out the door.

By the time, I got back the EMT was carrying her to the ambulance and she was crying uncontrollably. But it wasn’t a cry, it was a scared, rhythmic whine. She wanted her Mommy but I couldn’t hold her.

I jumped onto the ambulance first. Then the EMT lifted her in, along with herself. She laid her on the gurney and buckled her on. She handed her a huge stuffed bear, as big as my Laycie and she snuggled right into it.

I realized about the time we got down to the mailbox and I began to breath again knowing she would be ok for now, that I still had my Mother’s phone. Everything had happened so fast that I had forgotten to hand it back to her.

When we arrived at the ER, Laycie’s eyes were still dilated and she was still doing her rhythmic whining. They lifted her into a bed. It wasn’t long before the ER doctor came in. He asked all the usual questions. I told him I simply had her brought in to be monitored. He asked “what kind of monitoring are you expecting?” My honest emotion to that question was “what the hell?!” I replied, “I want her vitals checked and I want her here in case she seizes again to be sure her seizures are controlled”.

Laycie’s seizure was a Grand Mal. It lasted approximately 4-5 minutes. She was postical for 3 hours. She was completely unresponsive when the first responder arrived. My Mother said he insisted the EMT’s carry her in. Other than us, he saw the most of the results of her seizure.

It took Laycie 30 minutes to become responsive, other than the rhythmic whine she had in the ambulance. Her first response was to shake her head. It was barely visible and she would only tell me yes to simple questions that I asked of her.

It was another 30 minutes before she would speak to me. She couldn’t see me because her eyes were so dilated and out of focus. She couldn’t speak because her seizure had locked that part of her brain at the time. She couldn’t take her medicine because she couldn’t open her mouth. She wasn’t able to control that part of her body.

She didn’t talk until her Daddy came in about an hour after arriving at the hospital. She was so happy to see him. She lit up the room with the expression on her face. He climbed in the bed with her and she snuggled right into him. It was then she started talking.

She was quiet and slow but she was coming back to herself. We were finally able to give her her meds which she took with applesauce, though she wanted her usual yogurt.

She wanted to eat so her nurse brought her juice and crackers and found her a sausage and cheese biscuit. Laycie ate the sausage and picked at the rest. Her tiny body was so tired though she was trying to gain control of it again.

After eating she snuggled up to her bear the EMT’s had given her and took a nap. It only lasted about 15 minutes but when she woke back up she was back to herself again. She wanted to get off the bed. She wanted to go home. She kept trying to pull her wires off and put them back on. She was ready to be Dr. McLaycie, as we often call her at home.

Her least favorite part, even though she tried to prepare herself, was having bloodwork done. She did so well though. She tried not to cry but when the needle went in she lost it. Poor, sweet angel.

It wasn’t long after that we were able to go home. She’d had no seizure activity in the ER. Her vitals were all good and strong. The ER doctor called her med team at MUSC, who advised them to tell us to increase her morning dosage on her meds and to call and schedule her next appointment to be seen. So that is what we are currently doing.

We came home and we’ve been relaxing together ever since. She’s laid in Mommy and Daddy’s bed and watched tv. She’s eaten well and has a strong appetite. The med increase is making her excessively thirsty.

I’ve tried to encourage her to sleep but she’s scared. I asked her why and she told me a Monster tried to take her over. I can only assume she means her seizure. I’ve held her and talked to her until she felt safe enough to sleep.

I’ve personally struggled to go to sleep. I’m terrified of her having another seizure and being alone in it. Or worse, not waking up from it. I worry that I will wake up to find my baby not breathing. It is a living nightmare. A horror movie come to life.

Every twitch she makes, I wake up and check to see if she’s ok. I refuse to disturb her other than checking to see if she’s having a seizure and I won’t leave her side for long. When I do, someone is with her: Grandma, her brother, sister or Daddy.

Right now I’m in watch overdrive. She on the other hand, appears to be back to normal. She feels great, she says. The only set back is her fear of sleep and the thirst from the meds. I wish I could feel as at ease as she does.

She now carries her big white bear with her everywhere. We’ve named him Mr. Snuggles. In one day, they’ve been through a lot together. I imagine they will go through a lot more.

I’m sharing our story so that others have an idea of what a family and a child with Epilepsy goes through. Everyday people see my child and think “there is nothing wrong with her”. I only wish that was so. You can not see her disorder. It attacks when we least expect it, when we let our guard down and begin to think it’s ok. But it’s there. It’s a daily part of our lives and we are always looking, waiting, preparing for it’s attack.

Other Momma’s who do this daily understand. But not everyone gets the picture. My hope is that our story, our blog, our life helps give you a better understanding of what Epilepsy really is. And my prayer is that you never have to experience it first hand. SEIZURES SUCK!

God bless.

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Routine Neurology Visit {Epilepsy Awareness}

December 9, 2012 by Dana

Yesterday, we had an appointment for Laycie at Pediatric Neurology in MUSC – Charleston, SC. It was a routine checkup to see how she’s been doing and discuss her medication. Just another visit for us.

Of course, everything went well. I have concerns about her medication that we discussed with our neurologist. For some reason, Laycie has side-effects for every medication she takes. Depakote is no exception.

Her neurologist suggested I give Laycie a multivitamin with B6 to see if that helps to improve our side-effects. B6 is not a new vitamin but the helpful effects on patients with Epilepsy has just been noticed by many neurologists. It’s being used in the hopes to help balance out negative effects many seizure medications cause.

Medicine has come a long way in the time since I was born 33 years ago, growing up with Epilepsy and even in the past 9, almost 10 years that I’ve been raising children with Epilepsy. Every year more and more is becoming known about this disorder but there is still relatively little that anyone, doctors included, can understand.

What we as parents and patients of Epilepsy must remember is that the brain is such a complex unit. Add to that the complexity of Epilepsy itself and well you find a lot of confusion. The brain is like a complex computer with many different areas that control every single inch of our bodies, inside and out. This computer is only completely understood by God himself and no other being can read or understand it.

What we can do to help learn more is to detail everything we can about how Epilepsy affects each of us, how it affects our children and our families. We can share that information with other parents and patients, along with our neurologists. We can ask to join in on Epilepsy panels and volunteer for testing.

All of these things together work towards the medical teams learning more and more about how our brains work and how Epilepsy affects each of us. Nothing is too small and every one of us can help. Ask and find out how you can do your part today.

MUSC Here We Come! {Epilepsy Awareness}

April 23, 2012 by Dana

A few weeks ago Laycie was having a few strange things going on that led to a call to her neuro. The symptoms she was having could be related either to her seizures or her medicine but it was enough to concern me after a long period of watching to see what happened next.

The neuro told us that we could not raise her medicine dosage any more. She decided that she would like to test Laycie for a longer period than normal with an overnight EEG and sleep study. I was more than willing to agree.

So this week Laycie, Daddy and I are off to the Children’s Hospital at MUSC in Charleston to spend the week. Grandma will be home with Bubba and MiMi, keeping things going while we are away. Honestly, you’d think we are going on vacation with the amount of luggage we have ready to go: clothes, medicine, private needs, toys, movies, and more. It takes a lot to keep a 4 year old busy during a 3-5 day hospital stay in a room that she cannot leave without a tech to accompany her.

Daddy has to take off work to accompany us on our journey. His bosses are not thrilled with this but he knows Laycie and I both need him there. Being 5 months pregnant doesn’t make this trip any easier on me and being alone with a tired and sometimes very sick Momma doesn’t do Laycie any good either. Needless to say, we are both happy to have Daddy going along with us.

So tonight we have packed and are ready to go. The kids are asleep and we are soon to follow. Tomorrow we wait until we get the call saying our room is ready and then we will head off on our week-long journey in an effort to overcome our battle with Epilepsy.

What are your plans for this week??