My Baby Has Epilepsy

Hi everyone! I'm Laurissa from Sunday Mornings Blog! I dont really get to write that often... I have three little girls under the age of 5... so, while I have huge dreams for an amazing blog, it's on the back burner all the time! I actually started blogging about a year ago as a way to document the first few days/weeks/months/ years of my 5 year old daughter Lindsay's journey through Childhood Epilepsy. Since the blog was started very fresh into her journey, I will actually use most of her First Seizure Post to share what this exact time was like for her. I tried to sit and re-write it, but after multiple attempts, I'm reverting back to the original post... Its where the day was raw and the details are vivid, so here it goes....
February 2, 2013"My hubby works 3rd shift. Sometimes most times he works double shifts. He's never home. He works hard for our family. Although, like I said, he's never home. Obviously, I sleep alone most nights. Lindsay has a sixth sense about whenever Hubs isnt home.. Let's be real.. it's most nights... she climbs into my bed at some point in the middle of the night. This night was like none other...
At around 3:30am (knowing the time now, but not then) Lindsay was in my bed. She started shaking. I thought she was having some sort of dream or playing around. I then said "stop lindsay". She didnt stop. I turned around... My child was shaking. She was making the noise of someone that was trying to vomit, a sound that will never erase from my memory. I then shouted "LINDSAY, STOP". She didnt stop. We dont live near neighbors, but I assure you, they heard my cries. I continued to scream, "LINDSAY, WAKE UP!", "LINDSAY, LOOK AT MOMMY", 'NO, NO, NO, PLEASE GOD!", 'PLEASE, WAKE UP!". Nothing. She just kept shaking. In my arms. My baby...WAS SHAKING.
Thank God I have received previous training for seizures for my past job. Even in panic, my mind reverted to "put her on her side". I picked her up, put her on the ground and on her side. Praying to God to wake her up. The second I turned her head, foam came out of her little mouth. A sight that grounded me. It made me realize what was going on. A sight that will forever be engrained in my memory. My baby was having a seizure. As soon, as we were on the floor, her shakes started to slow down. I just kept trying to wake her up.. why wasn't she waking up?? Her shakes now resembled someone who was calming down from hysterically crying.. repetitive but not fast anymore. Then, she went limp. She completely fell asleep on the floor. All I can remember is saying everything I could think of, " Lindsay, look Daddy's here". "Look, Grandma's here!", "Look, a puppy!", "Look at Mom, Linds!". Nothing would wake her up... She just laid there.... limp. I can't even describe it. Why was my child just laying there? WAKE UP!
I then called 911. There was a brief second where I hesitated. I'm embarassed of that... but, all I could think of was that maybe I was dreaming. Then... ARE YOU FREAKING KIDDING, CALL 911, YOU STUPID WOMAN. We are new to the area, so landmarks, streets, and hospitals are not familiar to me. The operator just said they'd send me to the nearest hospital. That woman stayed on the phone with me and just tried to keep me calm.. All I can remember saying is, "She's not waking up, why isnt she waking up?", and she explained its very normal for them to fall asleep after seizures. She also asked if Lindsay had a fever. I told her no and thats the first thing I checked for. About 5 minutes later, two policemen made it up to my room and their faces were just... heart broken. I felt the saddness they felt for us... Imagine finding a little girl on the floor, not moving, with her mommy just laying their sobbing next to her. Those policemen have such hard jobs and see horrible things, day in and day out. Such respect. Anyways, they just sat there with me, asked a few questions like, "Has she ever had a seizure before?", "Does she have a fever?", and they also tried waking her up. One of them said, "You wouldn't believe how often this happens with kids... We see a lot of this"... WHAT?! Now, I dont have all the friends in the world, but I KNOW a lot of people with kids. Why haven't I heard more of these happening in kids? Do I just live under a rock? Still cant believe it.
About 15 minutes after I called 911, the paramedics came, two of the most sweetest and CALMEST people that I've ever dealt with. They just kept reminding me that this DOES INDEED happen a lot in kids and that I needed to calm down. Lindsay had been deep sleeping this whole time and only until the second the paramedic scooped her up did she wake up - and "waking up" is an understatement. She straight up freaked. Screamed and kicked and screamed and kicked. My heart shattered as they took her to the ambulence. I took that minute to call R, who works about 40 minutes away... How do you find the words to say what just happened. I'll share with you... "Rob, Lindsay had a seizure, I called 911 and she's in the ambulence right now, we're headed to the hospital." SILENCE. All he could say was, "A WHAT? OK I'M LEAVING NOW!".
I gathered up my other kiddies who were peacefully sleeping through all of this... snagged my wallet and phone (missed calls: 10). Started the car with my sleeping babes in tow... walked over to the ambulence in the driveway and peaked in. As soon as she saw me, she broke out in tears. The paramedics told me she wasn't talking much yet and still very disoriented. They gave her a teddy bear to hold onto, not realizing she was squeezing the life out of Sparkle and Penny (her beloved stuffies) under her arm.
I started following behind the ambulence and blindly driving to wherever they were leading me to. I just kept sobbing and praying. PLEADING for the Lord to wrap his arms around her tiny body for me because I couldn't do it myself. At this point, Rob had been calling me from his car so I called him back. We tossed back and forth of what it was, how it happened, and why. The images and sounds still haunt me til this day... Seeing your child go through that is possibly the scariest thing ever. R actually beat us to the hospital so he was there waiting for us. As soon as we found the entrance for the ambulence... R, swooped in and put on his HERO CAP, and calmed Lindsay down again. The paramedics said they were able to get her talking again by mentioning Barbies. Smart thinking, those paramedics.
She was seen pretty fast and I had to answer all of the same questions. They had to take her temperature a few "different" ways and that was NOT ok with her or me. Traumatizing is the best word I can think of and even that doesn't describe it. But, NO FEVER. I knew it. The ER doctor gave her the diagnosis of having a febrile seizure since Lindsay had no history of seizures. Rob and I both said the same thing to one another, "So, since she has no history, thats ok?", and "What, so this seizure and now she has a "history" of them? Do we just wait until she has another one and then they'll do something about it?". It made no sense. Then the ER doctor also said that after she talked to the on-call pediatrician, that while febrile seizures happen between the ages of 6 months to 6 years, the likihood of having them after the age of 3 is rare. She recommeded we have a follow up with our ped and then schedule an EEG. Then she added that since the hospital was busy that we were better off doing it that way then waiting there all day. Whatever.
So, we went to the pediatrician a few days later... that's a story in and of itself and quite frankly it irritates me every single time I think about it. Bottom line, though, we got our script for an EEG done at CHOP, Childrens Hospital of Philadelphia. We scheduled the appointment and then the day of the EEG, the technician was asking me all the same questions. The same questions that are now like a broken record and my answers are always on repeat. It was a 20 minute appointment, they used strobe lights and forced her to make herself dizzy by blowing on a windmill for 3 minutes straight. At the end of the test, the tech said that it normally takes 2-3 business days to get back to the ped's office and if something bad shows up on the test, it would be there sooner. We left holding hands and I sobbed the whole way home. Typical these days.
A week went by.... Then the second week, I called our ped's office everyday but was told the test hadn't come back yet. The first day of the third week, I called again, receptionist said she didnt even see a note for it but would call CHOP and ask them to fax it. I had gone grocery shopping that morning when the phone rang, it was the pediatrician about damn time. She said hello and then said, "I'm going to need your name for the expedited request for a neurology appointment. I froze. It's so true when they tell you life flashes before your eyes when in panic... Lindsays life in still pictures flashed infront of me. Then the ped said a bunch of long medical lingo that I obviously didnt understand or hear for that matter and then said the only three words I understood in the whole sentence: frontal lobe abnomality. Instant tears... Although contained to get all the information I could to call CHOP, yadda yadda. Then all of the sudden, I snapped back in reality... "SO WHAT DOES THIS MEAN?", I asked her. She says, "It means Lindsay has a seizure disorder. I'm putting in an expedited request to CHOP right now. I'm so sorry.". The boxes of crackers I was holding just slipped out of my hands. I fell to the floor. As dramatic as that sounds, I literally couldn't hold myself up. What was happening to my baby? What the hell goes on in the frontal lobe? Will she have a normal life, go to college, get married, and have babies? Will she be "that kid", the one that has seizures in school? WHY, OH, WHY did I let people convince me that this was a febrile seizure when I knew VERY WELL that she wasn't warm/hot? Why did I start to doubt my OWN instincts? This day was THE worst day of my life.
We are still waiting with a few more days to go until Lindsay's appointment at CHOP (her case WAS expedited). I'm so thrilled that this is the #1 Childrens Hospital in the country where she will have such high standards in care and the brilliant minds that make up the doctorate staff. For now, and ever since her seizure, my heart grew for her. My little hugs and kisses are more often. I catch myself staring at her, soaking her in. I want to make sure she knows she's loved. Make sure she knows that I love her more than I can even express in this lifetime. She's the one that made me a mom. She's the one that makes sure I'M ok when I'm crying for HER. She's the one that slept in my bed when I was sick a few weeks ago, just to make sure I was ok. She's taught me about God and the pureness He gives children. "
*This is a journal I have for my girls and this is the excerpt I wrote in it the day I got the results from CHOP. As you can tell, I was falling apart, but I wanted to document this time for her to look back at in the future.*
This was almost a year ago. I just read through it for the first time in a long time and it brings back all of those overwhelming emotions. I still remember thinking: She doesn't even have her bedroom set up! (we just moved in at that point!). What if she DIES? What will people think of her? Will she ever be able to drive? Continue ballet? SWIM? Go to college?! Get married?! (I know some of those are irrelevant but I was panicing, you get it). But one thing I remember panicking over and asking her neurologist about was, "What will I do if I dont wake up or hear her when she seizes in the middle of the night?". She simply answered, "A baby monitor." She told me to not go crazy with video one as I would likely become overly paranoid and watch her every breath, and she was very right; I know that's exactly what I would do. So, at 5 years old, Lindsay has a baby monitor next to her bed... I remember that baby monitor calmed my mommy heart those first few weeks/months. And, I knew I was doing everything I could to be prepared... the rest I leave up to God. I pray constantly for Him to protect her when I cannot.
After all of her tests were done with CHOP, they gave us the diagnosis of that her frontal lobe showed that she had the POTENTIAL to have epilepsy, but the human brain is so vast that we just had to wait it out and see if this would be the case. Well, sadly, about two weeks later she had another seizure, this one was in the late evening when I was downstairs but heard a huge THUMP (this was her head hitting the headboard of her bed when she was convulsing) and I bolted. After a call the the next day, the neurologist said we would have to discuss medication for Lindsay. The way you medicate a CHILD with epilepsy (repeated, but not febrile, seizures) is to try one medication, make sure there are no side effects, and then keep them on that medication for 2 YEARS. Its a commitment. Its a time to give their brains a chance to grow a little. Its a "time out", if you will. See, with children, sometimes seizures happen but they grow out of them when they are grown, kind of like an allergy (for lack of better words). So, she was put on Keppra, two times a day. She is also has a perscription for Diazepam, this is an emergency rectal medication given if her seizures last more than 5 minutes. She's had 3 seizures on Keppra (nothing like her first or second one.. these almost reminded me of an extreme panic attack, only her body convulses and she cant speak/sounds like shes choking, all lasting about 2 minutes). Its been a little over six months since her last seizure, which was a day before her very first ballet recital... She was amazing!
So, we will keep her on this medication and then she will be weaned off and be monitored for more seizures. If she has one less than 3 months later, she will go back on a medication. If she lasts more than 6 months, then we will have to think about whether to put her on another 2 year medication stint.
I should also point out that I never received a diagnosis on paper at that time. I called about 6 months ago for some blood work and I asked that they send me her actual diagnosis. She has focal (partial) intractable epilepsy with complex focal seizures. So, she has seizures that stay in the front part of her brain (focal/partial), they are usually triggered by being in a deep sleep (hence when she has her seizures) or by something visual (like a strobe light or watching movies in the dark) and hyperventilation, and her seizures are very hard to medicate or contain (intractable).
Now, almost a year later, Lindsay is as healthy as can be (6+ months seizure free!). I've immersed myself into my daughter. I've immersed myself into making every single minute count. I try to remember as much as I can about her little spirit, her funny quirks, and never-ending qualities. She's kind hearted, full of life, full of love, incredibly mushy and cheesy (we call her the Queen of Cheddarville!), sassy, very helpful and giving, and SO FULL of Jesus' love! I've also armoured myself with knowlege. I have watched her seize, watched countless tests done to her (EEG, EKG, MRI, CatScan), and watched her undergo bouts of anestesia (which had HORRIBLE side effects, may I add). I try and research as much as possible so I know whats to be expected and what is a possible good/bad outcome. KNOWLEDGE IS POWER!
I hope that I've helped someone feel comforted. I hope that I've helped shed light into this condition and made awareness for the future. If you would like more information about epilepsy you can stop by this website and if you would like to know how to donate towards children with epilepsy, you can stop by this website! Hopefully in a year from now, Lindsay will be seizure FREE for the rest of her life! Thanks for taking the time to hearing her story. :)
Do you have a story or post about epilepsy? We would love for you to link up and share it below!