Written by Becky Daniel, Allie's mom
My daughter Alexandra—Allie—now seventeen, had her first grand mal seizure when she was nine years old. We had embarked on a family trip driving up to Prince Edward Island through Maine. Allie was sitting in the back seat next to her two older sisters watching a DVD movie. Feeling drowsy, Allie nodded off. It was around 6:30 in the morning and we’d been on the road for over an hour. Suddenly, her sister Hanna, who was seated in the middle, felt Allie trembling. Allie began struggling for air and her eyes rolled back into her head. Hanna started screaming, crying and yelling Allie's name. My husband and I were jolted by the noises coming from the back seat. Immediately, he pulled off to the side of the road and ran over to open Allie's car door to see what the hell was happening to her. I was in shock, having never seen a seizure before, frightened that my daughter must be dying for some unknown reason that I couldn't imagine. We laid her out on the ground watching her arms and feet flail. She appeared to be choking on her tongue and she was drooling. Her eyes were blinking over and over and rolling back into her head. Crying and scared, I was holding her and talking to her, trying to let her know that I was there, that it was going to be fine, though not really understanding what was happening to her at all. My husband cradled her head so she wouldn't keep banging it on the ground. Hanna, still in shock, sat in the back seat crying while my oldest, courageous daughter, Aimee, grabbed the cell phone and called 911.
Thankfully, a nurse on her way to work at the Calais hospital noticed all of us huddled on the embankment. She pulled her car up behind us and offered to help. What seemed like a lifetime was really about a three to four minute seizure. We scooped Allie’s limp, lethargic body back into the car and follow the nurse to the hospital.
In the emergency room, after hooking her up to a heart monitor, giving her an IV and observing her while she woke up, they concluded that she’d had a grand mal seizure. They sent us out with a prescription for Trileptol and a recommendation to see a neurologist for continued testing in hopes of learning why this happened to our daughter.
We cancelled our vacation plans, packed our family back into the car, turned it around, and switched seats sending Aimee to the front while I cradled my exhausted, lethargic daughter in the back seat and consoled Hanna, who was still worried about her little sister.
Once home we watched Allie continue to have fifteen to thirty partial seizures a day for which she tried many, many drug combinations. She was admitted to Maine Medical Center and traveled by ambulance to Boston Children's Hospital for a long-term electroencephalogram (EEG), PET Scan, and several other tests. After almost two weeks of tests trying to answer why Allie suffered so many seizures so quickly, we got no definite answers. We came home with a drug combination that helped to control most of her seizures.
After living with this for several years Allie had another set of breakthrough seizure clusters and had to be readmitted to Boston Children's Hospital for more long term monitoring, again with no answers. Allie's doctor then asked her to try an experimental MEG test for additional answers. Again, we could not find any root cause for Allie's seizures, and this is where we find ourselves today.
Allie’s seizure's now are mostly controlled by a drug combination of Depakote, Lamictal and Vimpat, and we feel very lucky that she hasn't had a breakthrough, grand mal seizure since 2010. Although she continues to have focal seizures a few times a week, her meds seem to be working fairly well.
Please share this story in honor of international epilepsy awareness month.
Give to cure epilepsy: http://www.calivnscure.com
My daughter Alexandra—Allie—now seventeen, had her first grand mal seizure when she was nine years old. We had embarked on a family trip driving up to Prince Edward Island through Maine. Allie was sitting in the back seat next to her two older sisters watching a DVD movie. Feeling drowsy, Allie nodded off. It was around 6:30 in the morning and we’d been on the road for over an hour. Suddenly, her sister Hanna, who was seated in the middle, felt Allie trembling. Allie began struggling for air and her eyes rolled back into her head. Hanna started screaming, crying and yelling Allie's name. My husband and I were jolted by the noises coming from the back seat. Immediately, he pulled off to the side of the road and ran over to open Allie's car door to see what the hell was happening to her. I was in shock, having never seen a seizure before, frightened that my daughter must be dying for some unknown reason that I couldn't imagine. We laid her out on the ground watching her arms and feet flail. She appeared to be choking on her tongue and she was drooling. Her eyes were blinking over and over and rolling back into her head. Crying and scared, I was holding her and talking to her, trying to let her know that I was there, that it was going to be fine, though not really understanding what was happening to her at all. My husband cradled her head so she wouldn't keep banging it on the ground. Hanna, still in shock, sat in the back seat crying while my oldest, courageous daughter, Aimee, grabbed the cell phone and called 911.
Thankfully, a nurse on her way to work at the Calais hospital noticed all of us huddled on the embankment. She pulled her car up behind us and offered to help. What seemed like a lifetime was really about a three to four minute seizure. We scooped Allie’s limp, lethargic body back into the car and follow the nurse to the hospital.
In the emergency room, after hooking her up to a heart monitor, giving her an IV and observing her while she woke up, they concluded that she’d had a grand mal seizure. They sent us out with a prescription for Trileptol and a recommendation to see a neurologist for continued testing in hopes of learning why this happened to our daughter.
We cancelled our vacation plans, packed our family back into the car, turned it around, and switched seats sending Aimee to the front while I cradled my exhausted, lethargic daughter in the back seat and consoled Hanna, who was still worried about her little sister.
Once home we watched Allie continue to have fifteen to thirty partial seizures a day for which she tried many, many drug combinations. She was admitted to Maine Medical Center and traveled by ambulance to Boston Children's Hospital for a long-term electroencephalogram (EEG), PET Scan, and several other tests. After almost two weeks of tests trying to answer why Allie suffered so many seizures so quickly, we got no definite answers. We came home with a drug combination that helped to control most of her seizures.
After living with this for several years Allie had another set of breakthrough seizure clusters and had to be readmitted to Boston Children's Hospital for more long term monitoring, again with no answers. Allie's doctor then asked her to try an experimental MEG test for additional answers. Again, we could not find any root cause for Allie's seizures, and this is where we find ourselves today.
Allie’s seizure's now are mostly controlled by a drug combination of Depakote, Lamictal and Vimpat, and we feel very lucky that she hasn't had a breakthrough, grand mal seizure since 2010. Although she continues to have focal seizures a few times a week, her meds seem to be working fairly well.
Please share this story in honor of international epilepsy awareness month.
Give to cure epilepsy: http://www.calivnscure.com
 |
| Lovely Allie |
Dear Becky,
ReplyDeleteThank you for sharing your story. We had a similar experience this April when our then-15-year-old daughter had her first seizure, completely out of the blue. Your description left me breathless, because we had the same feeling that surely our daughter was dying. Since then, what has been worse than the seizures themselves (hard to imagine anything worse!) is the side effects of the anti-seizure medications. Could you tell us what your experience has been with that?
Wow, where to start...sometimes I have to wonder about the toss up between dealing with the seizures or dealing with the med. side effects. She has lost clumps of hair, lowered cognitive skills, her I.Q levels were so low on topomax that she could barely focus. We have watched her go through nightmares and creepy sleep walking. her appetite has been very little if none through out the med. changes. Her periods and hormones recently have been effected and trigger focal seizures. Mood swings . Hmmmmm, this seems like quit a rant, thankfully she is at most successful with the drug combination now of Depakote, Lamictal and Vimpat. Hopeing that will last for awhile with no break thru's. We are hopeing thru ongoing awareness and research there may be a surgery that she can under go one day to control the seizures so she can come off the drugs!
DeleteThank you for information, Becky. What a nightmare! It's so hard to imagine that the only way to find that miracle witch's brew that will help your child, if you are lucky enough to find one, is the hellish trial-and-error method. We haven't seen the physical side effects you described. Our daughter becomes psychotic with certain anti-seizure meds. I don't mean moody and crabby; I mean girl-from-the-Exorcist, spend the night-in-a-psyche-ward psychotic. That was worse than any seizure I have yet to see. As a bonus, her IQ is also dropping like a rock. Oh,joy!
DeleteI'm sorry for what you're going through, Lisa. I was on Keppra for six months and became really depressed, which is so unlike me. (I am usually the person convincing friends of the essential goodness of the world). Topomax transformed me from honors student to receiving-20's-on-pre-algebra-tests student in a period of about 48 hours. (Thank God that was before grades really mattered). After that duo, 13-year-old me refused to go near any Western medicine--I started to run into problems when I refused to go to the pediatrician for my physical haha. Therefore, I took a three-year medication vacation, which in retrospect I actually don't regret. That time in my life reminded me that I had some choice, a glimpse of control in respect to the uncontrollable.
DeleteHigh school brought Lamictal (I had this strange, out-of-body type experience which made me feel distant from my emotions) and the Low Glycemic Diet. I would definitely recommend trying the diet (the LGIT is a less extreme version of the ketogenic diet offered at MGH in Boston and I believe that a similar Modified Atkins Diet is available at NYU Med. Many centers do the ketogenic diet--you can check on the Charlie Foundation website to find one...) Like every medication before, it did not control my seizures, but I did break my addiction to chocolate which was a positive. Research about the Low Glycemic Diet reflects that 50% of kids whose seizures weren't reduced on two or more medications have a greater than 90% seizure reduction on the diet. When that failed, I tried Neurontin, which was better in terms of side effects, though it made me a bit sleepy. Vimpat was my favorite--it gave me the best seizure control and had the fewest side effects. (As I understand, the mechanism of Vimpat is a bit different than the other anti-epileptics in that it regulates sodium channels as opposed to simply blocking them). I just returned from an Afro-Ecuadorian community, where I was doing some interviews about epilepsy for a project. An old women with hair down to her waist and a bright hair-wrap helpfully informed me, the medications are "muy fuerte, muy fuerte." "I know," I responded.
~Julianna
Thanks for writing again, Julianna. I am tempted to try one of the diets with my daughter, though it would be hard to control what she eats when she's out of my sight, and everything I've read says to need to be pretty rigid for the diets to work. She has the added disadvantage of having developmental disabilities on top of her seizures, so she wouldn't have the capacity to take control of her health the way you obviously did. I admire you for doing that; it takes guts to stand up to the medical establishment. Her disabilities also seem to be making it trickier to find the right med, because her brain structure is abnormal and reacts oddly to medications. You are now the second person to mention Vimpat, which I had never heard of. I'll ask her doctor about it. Any experience with Rufinamide? That's next on out list of drugs to try because it is supposed to work well with structurally abnormal brains and have fewer behavioral side effects. I'm not holding my breath.
DeleteDear Lisa,
ReplyDeleteMy name is Julianna and I've had epilepsy since birth. I've also been on more than 10 anti-epileptic medications and would be happy to talk to you about my experiences. Unfortunately, I'm packing for a trip to the coast of Ecuador right now (I'm studying abroad this semester) but I will be sure to write you back when I return.
~Julianna