Updated: Jun 22, 2018
"Gabriella, my oldest child, my first diagnosed with absence seizures at 7 years old, and has now become refractory with absence and tonic clonic, awaiting the results of invasive EEG being done July 10 to see what will be the next step for her, RNS or being able to find her control at all, best describes her experience on her blog
Maria, my youngest girl, and second child diagnosed with generalized tonic clonic epilepsy also at 7 years old, has been controlled with depakote for the first two years of her diagnosis then switched to Tomprimate and has been seizure free for 2.5 years.
Maria, is a little mini me of Gabriella and she was so brave when she had her first tonic clonic on the school bus ride home from school, in front of all her friends, who thought she had "died" and Maria only knew later that she did what Gabriella did. Epilepsy is a strong family history, an aunt, her sister, another cousin and her other sister had febrile seizures, so she was very upset, but now that it happened in front of her friends. She hurt so much that day, she missed school for a week, she bit her tongue so badly, and we had to reassure her friends that she was okay and they all learned more about epilepsy and that Maria's brain works faster than her body wants to work and it makes her go into a seizure.
Maria through all the EEGs, blood draws, she was the treated as the princess in the neurolgy clinic at the Children's hospital. She has this smile that no matter what you told her she would smile, and she used that smile to get as many stickers as she wanted, even prizes for her brother who had to come along for the journey.
Over time, she developed this same sarcastic humor, to deal with the medicine side effects, the tired feeling, the memory loss, until it came to having to watch her go through the hair loss, weight gain in a teen age girl with the peer pressure of teenage girls. It broke my heart to have her stress about her body, her hair, now mind you this girl has hair past her waist. We asked to go off depakote, keppra (that didn't last long keppra rage) and found Tomprimate to be her magic drug. It was a good choice. Tomprimate, she lost that med weight, hair stopped falling out in clumps, but the tired feeling, the memory that was staying and getting worse, but no seizures! It was a compromise she accepted.
Sticky notes, 504, homework checks, emails to teachers, missing school due to headaches that were more than migraines, has become the normal until docs said being seizure free for years now, meant time to go off meds. She had been seizure free since 2009-2010 on meds and 2014-2015 discussed going off meds, let's see what happens.
Taper started and the first few weeks she was okay. The next few weeks, the breakthrough absence seizures started. "Mom, I'm seeing black, my face is twitching" in my mind, it was "damn it, why God, why couldn't you just take it away from this sweet girl?" So immediately back on Tomprimate and she was discouraged, but knew no other choice.
She was only thinking of one thing, I turn 16 this year, can I drive? Doctors told her we will have to get meds back to level, be seizure free 6 months and do an at home 72-hour VEEG. I've never had her be so questioning her epilepsy. Is it worth driving to do this? The inner torment for a teenager whose friends all had their permits and driving and she had to wait and wait and wait. My brave little toodle doodle (name I gave her as a toddler) she would toddle around following me and she loved to doodle on anything and it just fit she was my little toodle doodle. She agreed to have the VEEG and she was so funny about it, questioned the tech about making sure her hair would be safe. It took her a while to adjust, she was brave to go through this, kept her sweet smile even when she was discouraged. Her brother and his friends entertained her and it was okay. EGG cleared her and she got her license! That was the best smile ever!
As their mom, to watch Gabriella with the changes in her epilepsy, the ways that it can debilitated her some days, the changes in her mental capacity, memory, hearing, it is hard to watch this happen to my daughter and with each tonic clonic she has, the more clusters of absence seizures, the risk of SUDEP has tripled for her we where told, she continues to have a " don't give a shit attitude" and I hope that with this surgery that they can find the beginning of her seizures to give her once chance again to half just half of what she once had. I want her to have that one shining moment you know that through all she's gone through, all the moments she endured and put up with, what I thought how much more can this kid take, just to give her a break for once!
Maria, I've only seen on two occasions fear that something was going to happen that things might be changing. When she gets debilitating headaches, vertigo, she's scared her medicine isn't working and wonders if what is happening to her sister is going to happen to her, become refractory. I've seen her scared that she might not get to do what she dreams of because it's been such a challenge to play softball, go to school, and she's done so well on her grades every year, it was mentally draining but she did it, and softball it's always a challenge to find the energy to practice, to be motivated. I remind the girls that they aren't alone and I'm proud of every accomplishment they do, no matter how small or big. Live in the moment, smile through the challenge, and fight like a girl!
They are my heroes!!"