Spinning Wheels

IMG_6778We have been in AL for almost two years now. Frightening thought, considering that I had anticipated better care for the boys here and ended up with less than they had before. To date, they have seen 4 Pediatric Neurologist, 1 Geneticist and still just spinning our wheels as far as the “why.” Currently, we are traveling longer than we were from MS to New Orleans just to see a Pediatric Neurologist who at least seems to  have the ability to think outside the box. I still would never leave MS given the chance to do that over!
I don’t think anything could have prepared me for this journey with Brett, even Brynn’s journey was so different, looking back seems less stressful and complicated in comparison. IMG_6885
Tonight, Brett had a mild seizure as he walked down the hall towards his room for bed. I stood there talking to him and when he was ready we proceeded to his room. I read their Warrior Devotional, said our prayers, kissed both my warrior boys on the cheek and headed out the room. Brett’s headphones are broken, so he wanted to listen to his music on his iPod dock. Simple, but unacceptable to Brynn who had to take an Ativan minutes before because he was slurring speech, racing thoughts just spouting out and his left arm was jerking in those familiar myoclonic twitches, all signs it was not going to be a good night. So argue they did and Brynn took the iPod from Brett and slung it to the bottom of the bed. Abigail calls out “Brett’s having a seizure.” Indeed, he is, so I get the magnet and swipe.
He IMG_6721seems to come around and I assume that’s all. I explain to Brynn that his headphones are broken and it would be nice if he could listen to K-Love to go to sleep. I find K-Love, wait for the play button and for it to load and ahhh, a lovely song is playing. All this time Brett has been tummy down on his bed with his chin on his arm on top the wood low headboard. I say “Brett, scoot down and lay right.” To which he answers, “Who’s Brett?” I ask him if he is okay and he looks at me, and I know by the look he has no clue who I am. So I find myself standing there thinking, how wrong it is that this is “normal” in my world. Nothing could have prepared me for the heart-shattering pain and fear I felt the first time I heard those words, yet here I am staring at my precious blue-eyed baby boy who just said them and I didn’t feel panic. As with any other part of our IMG_6648Epilepsy journey, and many others like us, I was not informed or prepared to ever hear those words. So many things that have happened have been exactly the same. I can’t tell you how many times I have stayed up and researched all  night something that happened just trying to make sense of it. I never heard about SUDEP until I read about Danny on Dannydid.com.  Ms. Willa who did Brynn’s first EEG told me, “It’s okay Momma, people don’t die from seizures.” The very first Pediatric Neurologist Brynn saw after his first known Tonic Clonic while sleeping said, “People don’t have seizures while sleeping, he won’t have another at night it will be during the day, if he has another, everyone is allowed one.” The second Pediatric Neurologist said, “His Cognitive challenges and seizures are not related.” I never heard nocturnal seizures, even though Brynn had his first Tonic Clonic seizure while sleeping until I researched it. Thankfully, we went for a second opinion and stayed there for a few years, long enough to be educated, eventually get Brett diagnosed as well. I have been known to say that no one gave me a book, a pamphlet or even some printouts that could explain most of what we have had to get blindsided with. I imagine it would be frightening to tell a parent, one day your child may not know their own name, how old they are and they may become afraid of you because they do not know who you are. I still feel as though if I had the proper knowledge it may have been less scary and could have saved me hours researching the medical literature available online! Hopefully, we will make some progress soon. I feel it’s important to get those answers, the why my two boys have this obviously genetic seizure disorder and where do we go from here would be nice too!
So here’s to you dear parent with a newly diagnosed with epilepsy child. 
1. There are at least a thousand things that could happen and very few are positive things. The most important advice I can give is to take it one day at a time and keep a really good seizure journal describing every detail until you figure out what type they are.
2. Epilepsy can damage the brain, but most seizures do not. If you feel that your child is showing signs of regression find a psychologist or neuropsychologist and get testing done. This will not only  give you a reference point should true regression occur, but it will likely also help you understand and strengths and weaknesses your child has.
3. Changes are going to happen. It’s rare to come across a parent who says that their child always has the same exact seizures at the same exact times. For most parents this can be the most frustrating part. You can never know when it will happen and this can cause a lot of stress and anxiety for a parent if the seizures become or remain intractable. This is also known to cause stress on marriage and friendships. It is imperative that you have a support system in place. Know the symptoms of Caregiver burnout, especially if you have other stressors in your family dynamics:
http://www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm
4. Please, I cannot stress enough how important it is to learn the basics of seizure types and their symptoms.  I posted about this not long ago:
https://epilepsywarriorboys.com/2016/04/04/what-does-epilepsy-look-like-anyway/
5. Find other parents! There are several groups on facebook, you can find them by searching on facebook for “Child Epilepsy,” or similar terms and you may even have a local support group. Contact your local or State Epilepsy Foundation.
6. Know when to seek a Level 3/4 Epilepsy Center. The guidelines are here:
http://www.naec-epilepsy.org/spec_care/guidelines.htm
and to locate one use this link:
http://www.naec-epilepsy.org/find.htm

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Decembers Caregivers Corner NSDF

 This is a special place Found in our NSDF website for Caregivers only. Find comfort, support, and helpful resources here from caregivers just like YOU!
 
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This month, Caregiver Denise shares her thoughts and experiences on  stress  and a few resources she finds helpful while helping her boys live with Epilepsy.
Let’s talk about stress. It’s important to understand what stress is and how it affects your body, to fully understand how important is it to find effective measures to reduce it. Stress is a natural part of life, and believe it or not stress is a necessary part of creativity, learning and survival. Too much stress however, can have a negative effect of your daily life and outcome of our survival if not dealt with effectively. When you are feeling overwhelmed by stress, what your feeling is your body’s natural fight or flight response which releases adrenaline and cortisol. A little bit of stress, often referred to as acute stress can be exciting, and it keeps us alert. Long-term, or what is referred to as chronic stress can have long term effects on our well being.   I recently went to the Dr. because I honestly felt like I was having a heart problem. The Physician explained to me that the amount of stress I was under, compiled by my pre-existing anxiety had placed my body in a constant state of tension. I researched this and found that when you are feeling that fight or flight response in a crisis your body is going through a lot. The cortisol and adrenaline released in your body is speeding up your pulse rate, breathing, blood circulation, muscle tension and glandular function. When a caregiver of someone with Epilepsy has this happen over and over again, eventually the nervous system stays ready to react to a crisis all the time causing the body to stay in a constant state of tension. This state of tension creates a person that tends to react to small stressors the way you would normally to true emergencies. All those hormones that are created in the stress state must be released to bring our bodies back in balance. If we do not work towards reducing stress and releasing this built up tension, it can only lead to emotional burnout and complete exhaustion. The only way to break this cycle is to find ways that work for you to relieve stress. I encourage you to find ways to reduce stress in your lives. Doing this will help us be better caregivers, by having better health and positive long term health outcomes.
There are many forms of stress reduction techniques and I will just touch on a few of them.
~Music and Art Therapy
There are many options in this category! Sometimes just putting on your favorite upbeat CD can make a difference if you dance and sing along! My older child with Epilepsy has recently discovered that Art Therapy works for him. He will sit for hours and paint creating wonderful works of art. I also find it very relaxing to draw and paint.
~Prayer/Meditation
A quiet mind is more important than a positive mind. – Deepak Chopra
Take just 5 minutes a day to be in complete silence, focusing on your body and the effects of stress and learning to relax. This can be achieved in the bath, laying on your back in bed or even while sitting. Start at your feel and pay attention as you move upward focusing on noticing areas of tension and calming them. Once your body is calm and relaxed pray or focus on the positive things.meditate Think about all the blessings you have and the good that is in your life. Even if it’s just the pretty sky today or the beautiful flower you saw, find something to focus on that is positive and good. A Physician years ago use to tell patents to breathe in and out deeply. As you breathe in say (Peace, Jesus, Higher Power, Joy, Calm whatever you need) IN and as your release that deep breath slowly say (Stress, Anxiety, Tension, Sadness, Pain) whatever you need out OUT. So I often find myself saying Peace IN Stress out as I take deep breaths and so on. Focusing on releasing it seems to help me in a big way, even when I do not have a lot  of time. I find that CD’s that are designed with stress reduction, relaxation and meditation are a good choice for me, such as this one:
~Laugh
Laughter is a natural stress reducer that  is very effective at reducing stress. Watch funny videos, a funny movie and seriously just Laugh Out Loud!
~Exercise
Something we all may not want to do or think we have time for, but we all need exercise! Go for a walk, even if it is just up and down the driveway, get moving! Can’t go outside today? Stretch and touch those cute toes! Turn on the music and dance the stress away. Exercise will release those feel good chemicals to help combat those stress feelings.
~Practice Gratitude
When we make a point to keep track of Good, Positive and Beautiful things it helps us to not stay so focused on the Negative, Painful, Stressful things in our lives. I find that when I start to feel overwhelmed, if I start looking for simple little positives it helps combat the stress and overwhelming feelings. Such as, “Brett had a terrible seizure today, but he recovered well and his postictal is not as overwhelming as it could be.”
~ Volunteer 
What is available in your community or online to help you live your passion while helping others? Find it and ask about volunteer opportunities. Even as little as 1 hour a week can decrease your stress, help others, and increase your health. Volunteering to do that which you love decreases your stress and increases those feel good hormones instantly! I know from experience as I volunteer my time to reduce stress and feel good at National Seizure Disorders Foundation as Board Member and Treasurer. Leave a comment below to ask about our opportunities.
Life as a caregiver can be tremendously stressful  as we endure this roller coaster ride of good and bad days. Often it seems like we may never have a “normal” life again. I hope that today you will focus on ways to combat the stress that comes with this journey. I also hope that if you are feeling overwhelmed and need help you will reach out to those around you. Find other parents who are on the same ride and somehow it doesn’t feel so lonely. Just knowing that there are others experiencing the same stress helps greatly.
Denise MarshAbout the Author: Denise is a homeschooling mother of six who lives in Alabama. Denise’s two youngest sons, Brynn and Brett have refractory Epilepsy.  Denise volunteers her time and energy as National Seizure Disorders Foundation Board Member and Treasurer. Enjoy the monthly feature articles from NSDF Caregivers Corner written by Denise. 

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