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    Community Voices

    Overthinking and drowning🫠

    So it’s one in the morning, I’m in too much pain to sleep, and now I’m overthinking. It just hit me that not only can I die at any time, but next week my friends and the people I grew up with will be graduating and I won’t be up there with them. Because I had to drop out, take a year off, fail. I know I made this choice last summer and I was upset about it, about the fact I wouldn’t get a prom or a diploma, but God, it just hit me. I’m barely functioning, my parents think I’m not trying enough and my friends are all being successful and travelling for college or moving out or getting better jobs and I can’t even remember to eat on time! I can’t work! I can’t take care of myself! And oh my god, am I failure?
    #Epilepsy #Sudep #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #ChronicIllness #TheDisabledLife #Depression #severeanxiety #Insomnia #MentalHealth #disassociation #Schizophrenia

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    Community Voices

    SUDEP and Epilepsy: What Parents Should Know

    September 21 was a Monday in 2015. It seemed to be an ordinary Monday, and I was one of the few people I knew of at the time who looked forward to Mondays — a return to routine, something I desperately needed and still need in my life, especially being the mother of Matthew, my son who was on the autism spectrum. I got up early, around 5:30, made myself some coffee with my Keurig, sat down on the couch and turned on MSNBC’s “Morning Joe” as I did every morning, and then, with my iPhone, I opened up Facebook and started reading the early posts. I likely commented on the latest political scandal, as was a common practice of mine. Early mornings used to be my favorite time of day — “me time” — a time to get my mind prepped for the day that followed my two cups of coffee. 6:30 rolled around, and then it was go-time. I knew I needed to wake up Matthew and start his breakfast, get him prepared for the day. I quietly climbed up the stairs and tip-toed into his bedroom at the top of the staircase. It was unusually silent in his room. Matthew wasn’t making his “morning noises,” but he was a teenager, and teenagers sometimes sleep soundly. I sat on the bed and gently patted his arm. I realized, to my horror, my sweet angel was dead. Screaming, screaming, screaming. His father rushed into the room with his cell phone and dialed 911. September 21 should have been a beautiful autumn day, but for me, it was the worst day of my entire life. I didn’t know how this could happen. I knew Matthew had epilepsy, but he had medication and also a vagal nerve stimulator. Why? Why did no one ever tell me epilepsy could kill him? Why? My sweet, innocent boy whose face, those twinkling green eyes, toothy grin and moppy blonde curls, had graced newspapers across the country because he was unquestionably the most beautiful child imaginable, why did he die? And what kind of doctor wouldn’t at least arm a mother with the proper information so she could prepare for or take measures to avoid such a tragedy? The truth is, most neurologists don’t warn patients or their guardians about SUDEP, sudden unexplained death in epilepsy. Alarmingly, one out of every  1,000 adults with epilepsy die of SUDEP each year, and one out of every 4,500 children with epilepsy die of SUDEP annually. A recent article in the New York Times stated, “Sudden death in epilepsy is a little-known and seldom-mentioned phenomenon, but now, after a push by advocates, the federal government has begun a concerted program to understand it. Yet a question remains: When, if ever, should patients be warned?” I can answer that question. I, Matthew’s mother and primary caregiver, had a right to know, and I would have liked to have been given the opportunity to, at the very least, attempt to avoid Matthew’s death. My Matthew was my world, and I fully expected to be pushing his red wheelchair until my legs gave out around age 100. I can’t bring my Matthew back. But I can help spread awareness. If your child has epilepsy, be informed. Never miss a dose of their anti-seizure medication. Get a mattress with an alarm (even if it only gives you peace of mind). Look into seizure-sensing dogs. And teach your child to sleep on his or her back. My Matthew loved stomach sleeping. Had I known this was dangerous, I somehow would have trained him to sleep safely. I miss my funny, energetic, loving, gorgeous boy every day. I miss his giggles. I miss the devilish grin on his face that always came directly before he got into mischief. I miss how he used to play with his Slinky until it was a knotted-up mess. And I miss his sweet, soft kisses which he gave generously. Please, in remembrance of him on September 21 of every year, wear an orange ribbon. Yes, I know purple is the color for epilepsy awareness. But my boy loved orange. His sweet face still appears on autism websites and newspaper articles. The world isn’t quite right without him.

    Morgan Turpin

    Parenting a Child With Dravet Syndrome

    Morgan’s son. The last eight months have been nothing short of exhausting. In November of 2015, Dravet Syndrome pulled the rug out from under us, and we are still struggling to get back up. My sweet boy has gone from having one to two seizures a month, to now having 15 in a day some days. He has clusters of tonic clonic seizures every few days, and we never know how bad a particular day is going to be. I have seen his right side get progressively weaker, since that is the side he seizes hardest on. He has had seizures during sleep, in the pool, while eating, at the top of the stairs…pretty much every extremely dangerous scenario I could have imagined. He missed so much school this year, due to being constantly sick, or having multiple seizures in the morning while trying to get ready. We have tried medication adjustments, supplements, diet adjustments, cannabis, so far with no real relief from any of these measures. In the past eight months I have gained a perspective for how truly devastating this disorder can be. Now, instead of counting seizure freedom by the weeks, some days we count it by the hour. Thankfully, despite all of this, he’s still our Shayne. His language has drastically improved this past year, as well as his interactions with his baby sister. Despite all of the “bad days” and hospitalizations and all of the many many seizures he has had, he keeps smiling and persevering. He is hands down the strongest person I know. He inspires me, and I hope his story can inspire others as well. In honor of Dravet Awareness Day on June 23rd, I wanted to write about what Dravet means for our family. Dravet is a word I avoided for a long time. When we first got the results from Shayne’s genetic testing, I googled everything related to SCN1A mutations and came to the conclusion that Dravet was terrifying and the worst case scenario. We found out he has a nonsense mutation in SCN1A, that was detected by my very own work. When his doctor at the time assured us that clinically Shayne did not have Dravet, I felt so relieved. I pushed it out of my mind, and even felt defensive when I would tell people about his genetic mutation and they would say, “Oh, so he has Dravet, right?” It wasn’t until he was 2 years old and we saw our current epileptologist that he finally referred to him as having Dravet Syndrome. I immediately felt sick with worry after that appointment. It was as if something had changed, even though nothing had, just two simple words on a paper. But somehow those words implied a different outcome. They caused me to believe he was suddenly so much worse off. The worst part is that in my heart, I knew it all along. Those two words have caused me a lot of grief, but along the way I’ve also gained some understanding. It has taken me a long time to accept that a diagnosis is a good thing. It grants him access to services he needs to help him thrive, and it establishes that what he has is different than other seizure disorders. So what is Dravet? If you do a quick google search, you come up with some scary definitions. Most include the term “catastrophic.” As time goes on and more kids receive genetic testing, that definition is changing. Dravet itself is a spectrum, and unfortunately there is no real way to predict an individual’s outcome. No two cases of the disease are the same, so even finding another child with the exact same mutation as him would not give us much information (and so far we have not found another child with his same mutation). Dravet is a rare epilepsy syndrome, with a population frequency of about 1 in 22,000. I recently read an article that put that in the context of other genetic conditions: Down Syndrome occurs in about 1 in 800, cystic fibrosis (CF) is about 1 in 3,000. That means if you filled up Staples Center you would have about 25 people with Down Syndrome, six with CF, and maybe one with Dravet. He will have the condition his whole life, and it affects nearly every aspect of his life. Along with seizures that have multiple triggers and cannot be controlled with medication, he has issues with his autonomic nervous system (affecting his ability to regulate his internal body temperature), sensory integration issues, speech and language delay, behavior issues, and other learning difficulties. We have already seen aspects from each of those areas start to affect him, mostly within the last year. Dravet can also come with orthopedic issues, growth and nutrition problems, sleep difficulties, and chronic infections — that list we have managed to (somewhat) avoid so far. His seizures are not benign, and cognitive and physical decline is correlated with seizure control. He requires 24/7 supervision, due to the danger having frequent and uncontrolled seizures puts him in while performing simple every day tasks (like eating). He also has an increased risk of sudden unexplained death in epilepsy (SUDEP) due to the intractable nature of his seizures. There it is. It’s a long ugly list, but it’s reality. So now that all the scary stuff is out of the way, here’s the good stuff: He is funny. And smart. And handsome. And so sweet. And affectionate. And social. He has an incredible memory; you cannot promise him something that you don’t intend on following through with. He will remember and remind you until it happens. He loves music and dancing and going out to restaurants or to the movies. We call him FOMO because he truly has a fear of missing out. He loves his family, especially his baby sister. Although “Master Shayne” can be quite bossy at times, he also has an infectious smile and laughter. We don’t know what his future looks like. We don’t know how much independence he will have, or how much help he will need one day. All we can do is be happy with how he is today. The other day he was running around the living room with a pink fedora on, humming very loudly to the music in his head. I stood there watching him and I had a moment of clarity. Normally I would be stressed out that he is running around being loud, but this time I just watched him in awe. This time I was grateful that he has the ability to run around the living room. I was thankful to see him so happy, just being a kid. I spend so much time thinking about scary outcomes and worrying what life is going to look like for him later on down the road, that I forget to savor these moments. I forget that each day (or even each hour) without a seizure is precious, and cause for celebration! Each new word or phrase he learns is something to be excited about. Dravet has given us a serious dose of perspective. It has showed us that the “worst case scenario” does happen sometimes, but you just have to deal with it. I’ve had people tell me, “You are so strong. I don’t know how you do it.” Believe me when I say I’m no different than anyone else. I’m just a mama who loves her son, and I do what I have to do to take care of him. And I want what all moms want — to see her child happy, and for him to feel loved and cared for. Yes, I have had to think about things that most parents don’t have to think about. Yes, we spend so much time working on basic skills that often come easily to other kids. Yes, I have faced a time where I thought I could lose him. I have watched my husband perform CPR on him and I have suctioned food out of his mouth so he wouldn’t choke or aspirate. But at the end of the day, I’m just a mom who is doing what I have to do to ensure my son has the best life possible. Follow this journey on Our Journey With Epilepsy The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.