Nora’s Story (from her mother’s perspective).
I will start by saying this story is entirely from my perspective as a mother. I do not claim to know what my daughter goes through as a person living with epilepsy – that is her story to tell if she ever chooses to do so. I am sharing my experience as a parent because it is important for me. Soon after my daughter was diagnosed with epilepsy I was fortunate to be able to talk to another parent of a child with epilepsy– she immediately ‘got it’ and I instantly felt a connection to her. A group of parents founded CURE Epilepsy – they get it. I hope any parent reading this can feel some sense of community – as parents of a child with epilepsy, we instantly have a common bond. My daughter, Nora, was diagnosed with epilepsy in July 2020 when she was 13 years old. Aside from having recently recovered from mono at the time of her diagnosis, she had previously been a completely healthy child.
Her diagnosis came as a complete shock to our family. We have no family history of epilepsy and it appeared to come out of the blue. On July 5, I vaguely recall hearing Nora get up very early in the morning, but I vividly recall the noise that came from her room moments later. It was that mother’s instinct that something was not right. I quickly shot out of bed and went into her room to see her having a full-blown seizure on her bed. It was the most horrifying thing to witness as a parent. I am incredibly fortunate to have a very caring and calming husband who also happens to be a physician. He made sure she was safe, checked her breathing, and reassured me as I called 9-1-1. Needless to say, we were soon on our way to the ER. In my mind, I kept reassuring myself that the seizure was a response to Nora having been sick. My worst fear was she had a brain tumor. Never did epilepsy cross my mind. One of the first things they did when we got to the ER was to do an EEG. I was told that it would most likely be normal since she was not actively seizing (it was the first time I heard the word ‘post-ictal’). In the meantime, I answered the resident’s questions (we were at an academic children’s hospital). About half an hour later the attending pediatric neurologist came into the room. At the time, I did not know he was an epileptologist, nor did I know there were neurologists who specialized in epilepsy and were called epileptologists. He, too, asked me a battery of questions. When he asked, “Has Nora ever had a seizure before?”. I immediately answered, no, but then remembered two weeks before when she was sick and I heard her bang into a wall upstairs and stumble down the stairs. She was unsteady on her feet, could not talk for several minutes, was inconsolable, and she did not know who or where she was. [We went to the ER during that episode and were told it was likely the result of a high fever]. I asked him, “Could that have been a seizure?”. He quickly said, yes, and then told me that Nora’s EEG revealed SHE HAD EPILEPSY. I have heard stories of people being told they have cancer and not hearing anything else after the feared “C” word. I can assure you the very same thing happens when you are told your child has epilepsy. The pediatric neurologist knew this and so he looked at me and told me again, “YOUR DAUGHTER HAS EPILEPSY.”
He went on to share with me that she had juvenile myoclonic epilepsy (JME) and she would have it for the rest of her life BUT he was hopeful because JME often responds to treatment. Aside from needing to be on anti-seizures medications for the rest of her life, she should be OK. Despite the dose of good news, I was in a fog. I thought to myself, “What is myoclonic?” I knew very little about epilepsy, let alone that there are many different types. I am a (slightly) educated person who has some (minimal) knowledge of medical terminology and I had NO IDEA what my daughter’s diagnosis was or what it meant. I was confused. I was exhausted. I could not comprehend information. The words filtered in slow motion. Juvenile… Myoclonic… Epilepsy… Responds…Treatment… Life… Long… The pediatric neurologist was very patient and compassionate and spent about 20 minutes with me – which is unheard of in the ER, especially amid the Covid pandemic. He explained that it is common to be diagnosed at her age (young adolescence) and that it is common to have a seizure during or immediately after an illness. [We later learned she has photosensitive epilepsy – she was exposed to strobe-like effects from fireworks the night before as it was the 4th of July]. Basically, Nora hit the perfect storm. In the ER, the pediatric neurologist prescribed levetiracetam (Keppra), which he said needed to be started immediately. He also prescribed a “rescue” medication. I was instructed to administer it if she had a seizure lasting more than 5 minutes because a seizure lasting that long was a medical emergency (and to call the ambulance the first time it happened). By this point, my head was swimming (or rather drowning from the second I saw her seizing). I was told he wanted to see her in clinic in a month – “A month? Don’t you need to see her tomorrow?” As you can guess, the ER is NO PLACE to be diagnosed with anything, let alone a catastrophic diagnosis. I immediately began to Google anything and everything I could about epilepsy, specifically JME.
In the month that followed, Nora had two more tonic-clonic seizures and countless absence seizures a day. When we followed up in clinic, we reported to the epileptologist that, along with Nora’s seizures, we saw a lot of eye-rolling – it looked “stronger” than just a young teen rolling her eyes at her parents. It looked uncontrollable. We noticed it before but always passed it off as typical adolescent behavior. He mentioned there was a type of epilepsy that involved the eyes and eyelids but it was very rare. However, he suggested that Nora have a 24-hour stay in the epilepsy monitoring unit (EMU) so they could do a video EEG. A month and a half later Nora had her first EMU stay. In the EMU they continuously recorded Nora’s brain activity. A few hours after the EEG was started the epileptologist came into the room and asked Nora to complete a number of tasks (anyone who has stayed in the EMU knows the drill). After he completed his testing he said he would be back in a few hours with the results. As promised, he returned a few hours later. It should be mentioned that Nora’s epileptologist has a very gentle and quiet voice – one that without trying commands respect and also conveys a lot of empathy – you want to hear what this man says. He told me he thoroughly reviewed all of Nora’s results and had some concerns with what he saw. He said she had significant, almost non-stop, electrical activity and many small seizures. The part that concerned him the most was that she had seizures that were induced when she closed her eyes. I was baffled – or rather, I did not even know enough to be baffled – I wondered, “OK, what is the concerning part?” At this point I was still remembering her type of epilepsy usually responds to treatment. It was then that he told me Nora did not have JME and indeed had the rare type of epilepsy he mentioned in clinic. It was called Jeavons syndrome. He shared that it was very rare and he only has two other patients with it (at a large university children’s hospital), both of whom were female (Jeavons hits girls at a 2:1 ratio). He said it is notoriously difficult to treat. He was somber. He is a physician and parent. He got it. My heart fell. And then it fell some more. I held back tears as he shared that he would like to immediately start her on an additional medication. He reviewed the lengthy list of medications that would follow if this one did not work. He reviewed the side effects, which are enough to make a parent fall to the ground (for fun, read the package insert for lamotrigine or valproic acid). He asked me if the plan sounded OK. I was helpless. I had to defer entirely to him.
When he left the room I looked at Nora and cried. I am not sure how much she heard – the seizures made her very tired. I knew I would have to tell her that we had a battle ahead of us and I did not know how it was going to play out. I could play the “mom” role and be positive and optimistic but I also had to be honest. I knew we could do this, but my heart ached for my child who would have to live it. I grieved, and I grieved heavily. In the past three years since Nora’s diagnosis, we have become far more educated and experienced in epilepsy. Nora has had a lot of seizures, been on a lot of meds, failed a lot of meds, has been on meds that made her seizures worse; she has experienced side effects, too much acid in her blood (from a med), memory issues, and immense fatigue – and through it all she moves on. As an experienced parent, I read every package insert before Nora is put on a drug and I ask a dozen questions. Her epileptologist has come to expect this of me, and I truly believe he appreciates it. He welcomes questions and provides thoughtful responses. He will often send me the peer-reviewed research articles supporting his decision or answer. He is humble, he is kind, and he is very smart. His nursing staff is the same. I know how lucky we are to have Nora’s team. I know how lucky we are to have a level 4 epilepsy center AND a very skilled epileptologist (who is experienced in her specific epilepsy) just 10 minutes from our home. I know we are lucky to get a diagnosis so quickly after her first (observed) seizure. I have heard the horror stories of those who are not so lucky. Even with a skilled and compassionate medical team, epilepsy is hard. It is brutal. It is a relentless and an ever-changing disorder. It often feels like it is one-step ahead, and it always lurks in the background. You never know when or where it will strike. Any parent knows it is beyond painful, gut-wrenching, and such a helpless feeling when you watch your child suffer – it is our worst fear and one we have to confront daily when having a child with epilepsy. The fear and worry can become all-consuming, and I spent a lot of the past three years living that way.
It was during a typical sleepless night that I contemplated if I could approach my issue with epilepsy (yes, I had issues!) in a different way. Fear and worry were not serving me, and even more so, it was not serving my child. She is an intuitive, introverted, empathic child who observes and feels everything. And so, I decided to do a deep dive into spirituality and explore ways to find purpose and meaning in things. There had to be a purpose in what Nora was going through because I trusted the universe is not that cruel. I have long had an interest in these issues and have read a lot on the topic, but it now felt desperate. I had to live it. I have to live it. I recently learned to appreciate that there can be beauty in going through something traumatic. It is cliché but so true that we cannot control what happens but we can control how we react. Trust me, I am not here to preach. We are all on our own journeys and we are all in different stages. I guess my only point is that no matter what is thrown at us in life (and all of us have had something thrown directly in our faces), there can be slivers of good even in the worst of times. Some days we do not have the energy to see it, and that is OK (we can hopefully lean on others on those days), but I have found that the good always has a way of showing up. It is relentless in the best way. It shows up in the kindness of a nurse who says, ‘Yay!’, when Nora is doing well, an EEG tech who takes extra gentle care (getting EEG electrodes placed hurts), the unexpected card from a friend who wants you to know she is thinking of you, the unexpected text from a family member who wants to share they love you. It comes when you sympathize more with the person in line at the grocery store, and even when you may not feel like it, you smile at a stranger in the hope of conveying they mean something. It comes in the level of compassion I see in my child who wants to dedicate her life to helping other children (she wants to be a pediatric nurse because of the care and compassion she has received from nurses during multiple hospitalizations). I have learned that my capacity for love has grown. The love I have for my daughter goes far deeper than I could have ever imagined. I loved her before and did not think I could love her more, but my heart bursts with love for her (even when she does not think so – remember she is a teen!). The love I have for my husband has grown in beautiful ways. He patiently and with intense love cares for her when she has a seizure, and he injects humor into our lives every day. I go to bed every night thankful that the universe has gifted me with these two beautiful souls, and the countless amazing souls around us. The amount of respect I have for my daughter has grown exponentially. I was recently at a dinner for an epilepsy awareness month kickoff event (an event I dragged Nora to – she preferred to “chill” at home – I will share that I did see big smiles on her face throughout the evening – anyway, I digress). We were seated at a table with an adult child with epilepsy and his father. At one point the father leaned over and said to me, “My son is my hero”. There was such pride in his voice and his eyes. I smiled and nodded with an inner knowing. Yeah, I get it. Nora is brave daily – how many of us can say that about ourselves? Nora faces challenges and physical pain I cannot fathom [it takes hours and days to recover from tonic-clonic seizures]. And she moves on.
I once wrote that epilepsy is a part of Nora but it does not define her – it was meant to be flattering. I now realize I am not so sure that it is for me to say, or even if is it a bad thing if it does define her? Heck, in many ways it defines me. She is on her journey, and it is up to her to decide what, if anything, defines her. It is up to her to decide what role epilepsy and being an epilepsy advocate plays in her life. She is on her path and thankfully I get to be there alongside her. If it were up to me, we would attend every epilepsy event together and scream from the mountain tops about how important it is to end the stigma around epilepsy, to find a cure, and to secure more funding for research. As a mother I will do that – I will do what I can because it is ONE of the things I CAN do. I cannot stop the seizures, I cannot control the side effects, I cannot protect her from epilepsy – but oh yeah, I can be a voice, I can share my story as a parent, I can do what I can to raise funds. I can advocate for her. It is not an obligation; it is a gift. Without a doubt, I first and foremost want Nora to be healthy and happy. But I, too, wish for her to be able to find joy after moments of sadness, lightness after moments of dark, humor in times of seriousness (lots and lots of humor), love in times of despair, and grace in times of chaos. This is not an easy world to live in, even on good days, and I cannot guarantee she will have an easy life. But hopefully I have taught her, and more importantly been a good example, that kindness always wins and gratitude can be found in any circumstance. As I write this, the fear is not entirely gone. I am not sure it ever will be. I still check on Nora every night because SUDEP is too real. But the degree of fear has softened, which opens up more room for the good. We welcome the good.