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All Parents of Children With Epilepsy Should Be Warned About SUDEP

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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 150 people with epilepsy die of SUDEP each year.

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.

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I Am Struggling With My Epilepsy Diagnosis Today — and That's OK

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My name is Nikki, and I’m currently struggling.

That’s the first time I’ve ever wrote that out. In today’s society, even if people know about your condition, they don’t always want to hear about the times when you don’t want to get of bed, or when you can’t control your bodily functions, or when you’re angry at the world. They like to congratulate you on “dealing with it so well” without wanting to know the details or call you a “hero” for living your life.

We need to change that. An illness or disability may not necessarily be wanted, asked for or enjoyed, but that doesn’t mean we can’t live hugely exciting, fulfilling lives that may be better because of all the things we’ve learned through our diagnoses.

I have primary idiopathic generalised epilepsy. That all means I have grand mal seizures regularly, and I’ve had a few partials. I was diagnosed at 18, and I take a chemist full of medications to try and control them. My family care for and challenge me every day, my friends encourage me to take on the world, and for the most part, I’ve lived my life well since being diagnosed. I’ve graduated from University, got a career, gone on holidays, and I get to be really involved in my niece’s life. In general, I’m happy.

But I also have things to deal with like side-effects of medications, ignorance from others and epilepsy challenging my future plans. I feel like I’m expected to deal with this by concentrating on the good parts, by showing the world a happy face that is grateful for the fact that I can study or work or have a family and friends group that is second to none.

I don’t feel grateful today. Today I feel angry that I have epilepsy and that one night out with friends has caused two seizures in two days. Today I feel unattractive because the medication I take is making me lose my hair and gain weight. Today I feel guilty that the people around me have to deal with some part of the epilepsy. Today I feel jealous that I can’t run away from the epilepsy when it gets too much.

And I’m beginning to realize that’s OK.

It’s OK for me to say, “Today was horrible.” It’s OK for me to be angry or upset. Feeling bad won’t stop seizures from coming, but having this condition shouldn’t mean I get cut off from a range of emotions. I am entitled to be upset when I have to cancel my plans through no fault of my own, for example. I shouldn’t have to hear, “At least it wasn’t three seizures,” and somehow feel grateful that it was only two. I think sometimes we worry too much about being that person people pity or about being a “whiner.” But a wise friend once told me to own my emotions. I grappled with what that meant a lot before I realized it was simple. Never discount, ignore or hide an emotion. Sometimes the only way to get to that happy place is to look around and accept that the place you’re in right now makes you mad.

I’m Nikki, and today, I’m struggling.

For anyone else having a bad day, too, my advice is that everything is temporary. We all have bad days, including those who don’t have epilepsy, and we all have good days. Today may be a bad day, but tomorrow may be the best day so far.

Image via Thinkstock Images

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A Letter to the Mother I Was Before My Son's Tracheostomy

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A little over a year ago on, May 13th 2015, my son had a tracheostomy. He was four and we had really been through the ringer with respiratory illnesses that whole year. He has epilepsy, low muscle tone, cerebral palsy and a slew of other battles. A tracheostomy, or a tube in the trachea to help with breathing difficulties, was brought up six months before we finally agreed to it, and my son’s pulmonologist asked me, “If you ever come up with what to say to parents to make this decision easier, please share it with me.”

Well, I didn’t figure that out, but I did reflect on what the last year has given our family and how much I would urge others to really try to see the benefits of a trach if it is brought up as an option to make their loved one’s life easier. I wrote a letter to myself; it was the best way I could think to show what has changed and how we have grown.

My son nearly died from pneumonia and pseudomonas a month before we made the decision. We spent more than a hundred days in the hospital the year prior to having the tracheotomy. He had to get to that point before we gave in. I believe we made the right decision for him, at the right time. We had the guidance of amazing doctors and nurses who sat with us and discussed every detail and answered every question we had. That helped so much.

It really was the hardest decision we’ve made so far, and we have made many. It shouldn’t have been the hardest, but it’s very hard to see that when looking in from the outside. It was worth it. It was worth facing our fears as parents for one more chance.

To the mom I was before the tracheostomy,

I know this decision will sit with you as one of the most difficult ones you ever have to make. You are choosing to have a hole surgically placed in your child’s neck and neither of you will ever be the same.

But, it is going to be OK. You are so much stronger than you give yourself credit for. You have tackled everything up to this, and you will dominate this challenge too.

I recall the thoughts you are having.

Will it be scary?

Does the good outweigh the pain of surgery and recovery?

Are we unnecessarily prolonging his struggle?

Is it going to be strange to see something around his neck all the time?(This sounds so vain when I read it, but it’s how I truthfully felt at the time.)

How will I learn all this new information?

Will people stare?  …and on and on.

It’s OK to be worried, but life is going to get immensely easier.

This is a quick surgery. It takes about 45 minutes when it goes to plan.

You will be able to see his face again. Always. No tubes, wires, Bi-pap masks — nothing will ever have to be taped to his face again.

This could not be predicted, but it has been one year and he has not gotten pneumonia. That is a miracle after nearly losing him so many times to that pesky illness.

You will be tired for a while. You’re going to be overwhelmed with nurse schedules and supply orders at first, but like anything, you will adjust.

Training will seem intense and scary, but once you change that trach the first time, it will only get easier.

You can do this. You really can. Don’t doubt yourself. Other mothers and fathers have done this.

My shaking hands were the first ones to change Jake’s trach after the initial change. I did it. The sense of empowerment knowing what I could now do for my son was overwhelming. I could give him an airway.

When he gets sick now and secretions are heavy, and he’s working hard to breathe, it’s a simple matter of turning on a few machines and running a few nebulizers. At the worst, changing his trach.

We stay home now. We go to school now. We go to restaurants and the mall. We don’t hide anymore. Because of his trach, Jacob gets to live his life and you get to live yours.

The word “trach” is scary, but only when you’re on the outside.

To families like ours, the word trach is refuge, freedom, strength and endurance. It means pneumonia doesn’t have to win. It gives us the home field advantage.

A year ago, I felt like a trach was a horror movie I wanted to hide my eyes from, and I was spending so much time at the hospital with Jake, it became comfortable to be there. Today, as I listen to his nurse do his routines and get him ready for bed, I am comforted that he is home. We have control, and we can see his whole face, all the time!

I know it is a hard decision, but you are making the right choice and I’m proud of you. When they tell you life will be easier, believe them — even if it gets a little harder first.

Sincerely,
A one-year veteran trach-mama

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5 Things I Wish Others Understood About Living With Epilepsy

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I’ve been diagnosed with epilepsy for years, and people automatically assume the worst about it. They wonder, how do I work, how am I in school? So here’s what I want you to know before making judgments about someone with epilepsy.

1. Epilepsy can affect people differently. It can be a struggle, and some of us are unable to work or live alone. But that’s not necessarily the case with all of us.

2. Having epilepsy isn’t a choice. Just like with some other disorders, some of us get diagnosed early (like I did at just 5 months old) and some of us get diagnosed later in life. But it’s not something we woke up and decided to have one day.

3. It involves more than seizures. There can be side effects from our medication, such as dizziness, stomach upset and feeling tired. It can affect mood as well. There is more involved with epilepsy that is hard to understand unless you go through it.

4. It can feel like we’re fighting a battle. Epilepsy can feel like a battle all in itself, especially for those with uncontrolled seizures. Can you imagine having multiple seizures a day? Now do you see the battle?

5. We are warriors. When you’re fighting the battle of your life, you can’t be anything but a warrior!

My advice to anyone living with epilepsy who faces assumptions or judgment because of it is this: Ask your friends and family to read this story and other stories about epilepsy. Ask them to join an epilepsy support group. They might not understand unless they go through it themselves, but they need just as much support as we do. As hard as it is on us to be the one going through seizures, medications, appointments, etc., it can also be hard watching someone you love go through that.

We have to look at it through both points of view. So do not be quick to get mad when someone says or assumes something we don’t like or we know isn’t true. I suggest smiling and pulling up the facts for them instead.

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My Biggest Regret After I Was Diagnosed With Epilepsy at 14

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I was diagnosed with epilepsy when I was 14 years old. My seizures were non-convulsive, so I felt “lucky” that no one could knowingly see my seizures. With my non-convulsive seizures, I’d have a spasm but was fully awake and aware. I tried to hide it as long as possible. If someone saw me have a spasm in my arm and they’d ask if I was OK, I would lie and play it off as if I had a quick twitch. Playing it off as if I were OK has been my biggest regret.

I wasn’t OK. I was diagnosed with epilepsy and was depressed about it — understandably. I was paranoid and constantly thinking about when the next “spasm” would happen. My friends didn’t know I had epilepsy, and I acted as though I was emotionally fine to my family. But I would cry in private and pray for it to go away.

This was before Facebook, and I was only 14, so I didn’t know of any online support groups. I battled this alone, which didn’t have to happen, even if the support only came from people online who were also coping with seizures.

To anyone who has been just diagnosed: Talk about it. Even if it’s just one friend or a family member, open your heart up entirely. Coping with epilepsy isn’t easy, and fighting battles alone only makes it harder to win.

I’m 27 now and pretty open about my epilepsy. It took me 10 years to be comfortable about opening up about it, but now I am happy to. People don’t judge me the way I thought they would. I feel as though I made my battle more difficult than it had to be by hiding the issue. Hiding creates unnecessary worry, and you already have enough to be worried about.

What also helped was having a friend who also had epilepsy and was more open about it. When you have an invisible illness, there’s a chance that someone you know is also fighting the same battle and you have no idea. Be the one to start the discussion. You will be proud you did.

Lead photo source: Thinkstock Images

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When My Son Spoke Out to Support His Brother With Epilepsy

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My family recently asked our local Council to fund a ceiling track hoist in the living room so my son with cerebral palsy and life-limiting epilepsy could sit on the couch with me, his father, and his two brothers, including 9-year-old J. Our request was declined, so I wrote this letter:

Dear Council Members,

Thank for your email informing me of the “very difficult decision” the panel had to make in declining our request for a ceiling track hoist. The equipment we asked for would have helped us lift our son onto the sofa so we can sit together as a family.

Thank you for explaining this is “beyond the standard criteria.” I acknowledge your service has limited resources, especially in the current political climate. I too live by a budget. It was very helpful to read your criteria. I note that it focuses on functional independence, essential daily living needs and whether it saves the council money. I also notice that your criteria doesn’t mention comfort, being a brother or son, or creating memories.

I think our criteria for what is “essential” is very different.

It is important that I feed and look after a pet in my care, but it is my duty and privilege to love and nurture my son. I guess because he is blind and can’t walk, you could say he can’t see us all sitting together without him. I suspect, though, that if I willingly and repeatedly excluded either of my other children from “family time,” I would be rightly accused of emotional neglect.

Having a son with complex needs and life-limiting epilepsy has shown me that life isn’t about staying warm and fed. It is about love and relationships. It is about making memories and valuing a person — not what they can do. All the best parts of life can’t be touched, seen or quantified; they are felt. I don’t want to complain about life being hard because I don’t ever want my son to think I begrudge the care I give him. I don’t want him to feel anything other than cherished. The truth is, however, that your “difficult day” has resulted in many more rubbish days and weeks for me.

The impact of your decision hangs over me like a bad smell as I grapple with what it implies about the value of my son’s life.

I have to decide what to do next. Do I start the letter writing and complaining? Do I take on the role of advocating, and highlighting how ableist this decision is? Sadly, I know from experience that trying to validate my son’s needs to a professional quickly eats away at my joy. It is an exercise that costs me much more than the time it takes to write a letter. I know that at some time in the future, all I will have are the selfies of us sitting on the sofa together. When all I am left with are the memories we have created. So I have a choice to make.

Do I line my filing cabinet with more letters to you, or make memories?

Be assured my husband and I will continue to sit with all our sons, for as long as we are able. In the meantime, our backs will bear the brunt until we can raise the money for a ceiling track hoist. I really hope you don’t suffer from too many “difficult decisions” because life is tough and then you die, so make it count.

I also hope you manage to improve more lives than you hinder. After your hard day at work, you get to leave. Sadly, I don’t have this option, because this is my life, not a job I can clock out from. Once you are home, after your difficult day, I hope you are able to relax on the sofa with your loved ones. When you do, please spare a thought for this family who, as a result of your “difficult day,” have had this “luxury” restricted.

Yours,

Rachel

P.S. I know you aren’t a baddie and you have your own struggles, ones I know nothing about. I’m not trying to create an “us and them.” I honestly wish you all the best, but thought it might be helpful if I expressed the impact these decisions have on real families like mine. One day I might write and let you know what a “difficult day” looks like for me.

After writing this letter, I told my 9-year-old son J about what happened. First, he was teary before quickly becoming angry. I told him that I had written a letter to the council explaining how I felt, and he could, too.

“What good is a letter from a child?” he asked.

“What you think is really important. Grown-ups write letters to the council all the time but 9-year-old boys don’t,” I assured him. “We all need to say what we think is right, no matter how old we are.”

I suggested he put pen to paper and promised it would count instead of homework… here is what he wrote.

J's letter to the council.

It reads (all misspellings left intact):

Dear ___ Council,

My mummy has told me that you won’t let my famaly have a houst in our living room so my disabled brother can sit on the sofa. I heard you said it cost to much to install but from leaving the EU don’t we have lots more money? (It seems the propaganda reached Year 4.)

He is very special to me and we are all uneaque we sould have the right to sit with him. As well as this he is getting heavyer and my mum and dads back are getting weaker. Taking away our happy memerys will be reasting on your soulder.

Sincerearly J

I’ve posted the letter, and I hope they give him the courtesy of writing back. I’m not expecting a change of heart. But once again, I hope this highlights how decisions made by professionals around a table impact lives, not just of disabled children but of those who love them.

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