Epilepsy

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What’s a Warrior Mom or Dad Anyway?

b88c4ff1ba453f745e54a61d222cc76f I am sure that there are a lot of various opinions of what it means to be a Warrior Mom or Warrior Dad. The past week has brought many different emotions for me, all familiar for any parent who has a child with special needs. FRUSTRATION/ANGER: Angry that I cannot get the right treatments for Brett concerning his ankles, legs and pain problems. Angry that we yet again have landed in a place that does not have more than one neurologist close by who is willing to see Brynn and Brett because “They have complex care needs.” Angry that I have to make all these phone calls just to get the prescriptions every month, it’s not supposed to be this complicated.  The list goes on, but you get the point. SADNESS/GRIEF: Going through facebook photos looking at how great Brett looks compared to a few years ago, I saw artwork he had done back in 2012. Paintings that he is not capable of today. It’s a painful sting to the heart, to remember my beautiful little boy that was to be, that is not anymore. When your child regresses and looses skills, years of development, there is a grieving process that you must go through. At some point, you realize what the physicians are not telling you, that your child will never become the child that he/she was born to be. This monster has stolen that child and now, the child that you are left with is and will be only a shell of that child. Ultimate sadness yet again as I read that another precious child was taken by seizures. No matter how many times we read those statistics, or hear about SUDEP or even tell others about the risk of death that seizures bring, it will never change the sadness that our community feels when we loose another precious child, mother, father, sister, brother, anyone to epilepsy. One seizure is all it takes, ONE. 

 So, what is a Warrior Mom/Dad to me? A Warrior Mom or Dad to me is a Parent who becomes involved in their child’s epilepsy journey to such a degree that they don’t often have time for pity parties. They don’t post on social media every time they get sick, have a seizure, visit a doctor, get new glasses or go to the park. They would rather spend that time advocating for epilepsy awareness, researching treatments and options for their own child and as many others as possible, helping support the overall epilepsy community as well as other epilepsy families and especially those newly diagnosed.
 I’m going to say this in the nicest way possible, and I do mean this in love. If you have a child who has been diagnosed with epilepsy for 5+ years and you cannot answer these basic questions you need to learn the answers to begin advocating for your child effectively. 
1. What type/types of seizures does he/she have? 2. Are they Partial or Generalized?  3. What medications is he/she currently taking? 4. Has Genetic test been done? If so was a gene identified? Which one/ones? 5. What part/parts of the brain are the seizures coming from? 6. Does he/she have a VNS? Why/Why not? 7. What’s the longest period of time since diagnoses that he/she has been seizure free? 8. How many seizures per week or month that you see on average? 9. When was the last EEG and what were the results?  10. What is your child’s seizure plan for a seizure over 3 minutes, 5 minutes? Do you have medication at home to use in the vent of a seizure that goes over the time that is safe? Why/why not?

 Frankly speaking, I see so many parents in the epilepsy community and I worry about so many of you. Especially when it’s been in that 5-10 year since diagnosis range and your still there, posting the same things or worse just like a diary of your child’s life in a support group but you never seem to mature in your journey to the level of advocate that you begin to reach out and help others the same way that you were helped. THAT is what makes a WARRIOR MOM/DAD so great. I mean who else can, right? 

~Denise

Check out my Etsy shoop for VNS Bracelets, Bands and Clips. Awareness decals, and other Special Needs items! http://etsy.com/shop/EWB2

c9b9f94ad5c117778e0df94ef083466d--warrior-tattoo-female-warrior-girl

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It’s been so long…

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I don’t even know where to begin! We are in a happy place, with less seizures, more smiles and lots of laughter! The Aptiom has been amazing for Brett, in addition to drastically changing his VNS settings. He has gone down to minimal seizures, with having only a few a week. Recently, he went the longest ever without a seizure for 11 days! He has done a year of PT and OT, worked really hard in both and made exceptional progress. He hasn’t used his wheelchair except for a handful of times, in almost 2 years. Initially Brett had fine motor control of a 2-4 year old. He is in range with his IQ now at 6-8 age level. He will start up OT and PT again soon and we look forward to seeing more progress. We also hope to get him into vision therapy, as he has a visual disorder that they haven’t figured out just yet. We will finally get Brett’s Service Dog in a few weeks. It has been a LONG and painful journey to get here… but it’s time. He has been through a lot and healed so much since then. I am forever grateful for the anonymous donor that donated through the Chelsea Hutchison Foundation as well as DomestiPups for this amazing miracle for Brett! 

I still can’t believe my Epilepsy Warrior Boys are 18 and 13 already!! 

24909877_10214496209856270_659568372617918225_nbrynn18

Brynnon is a handsome man now, at 18 he is still funny as ever. He still has a few seizures a week, which causes some aggression and irritability, but other than that he does relatively well. He has done well adapting to the world with his moderate intellectual disability and still loves to fix things, especially taking apart things to see how they work! 

With the time available and money needed I figured out that for me, sewing is therapy! I started the adventure wanting a quilt for Brett. When I saw the prices, I decided to make one for him. Well, that led to me making ones for all my children. I started making VNS Magnet Bracelets along the way too. Oh how I do so greatly enjoy making special needs items that will help a child feel special. I started doing vinyl decals for EMS alert, since we use them I knew other parents had a need for them as well. I got busy enough that I opened my own Shop on Etsy! Check it out! 
http://etsy.com/shop/EWB ! 
Here are some of the items I have made for our family and other special needs families! 

Say Bye Bye to those black  plain medical bracelets that come with your VNS magnets and HELLO to having your favorite colors and your name embroidered on yours. Wear them
confidently because they are stylish, adjustable and comfortable. What are your favorite colors?
Let me make yours today!

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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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Catching up!

 










 

There are a few of you who follow this blog of my sporadic at best ramblings who are not involved in social media, so sorry for the long span without an update. We have been on this Epilepsy journey since 2009, starting with Brynn. Never did I consider it was even possible for any of our other children to develop epilepsy. There are a few people that say things like “Your so strong.” I hate that because I am not at all strong. Without God’s grace and help, I would have never been strong enough to get through the stress and trauma I have seen in my life and surely this epilepsy monster would have put me over the top. I have likely done more research than the six neurologist, too many pediatricians, Psychologist, Neuropsychologist, two epileptologist’s and the geneticist combined trying to figure my boys condition and cause of it, what we are dealing with and how to help them. I have still not given up, like everything else in my life I am geared to over obsess over problems until I to let it go because I start to loose my mind or until I reach the answer, whichever comes first. Unless you have a child with intractable refractory epilepsy it’s impossible to comprehend the roller coaster that we live on. Every day, you wake up and brace for the unknown. Seizures seem to constantly change and evolve either for the better or worse, but nothing stays the same long. We have been blessed to see weeks without a single seizure and we have struggled when we watched the twinkle in their eyes disappear as seizures took over and stole their precious memories, learning, endurance, laughter and fight away. At least, that is how our journey has been. Plans? We don’t often get to make plans. It is much easier to live spur of the moment. We have left seizure clinic in a wheelchair half the times we have been to see the neuro and once in an ambulance for status just getting a seat belt in the wheelchair. I have forgotten to bring shoes to the ER, forgotten what medications they take, even given the wrong age and date of birth to paramedics. I am lucky I remember my own name in an emergency. I have zero sense of direction, and just so you know, I couldn’t find my own home without a GPS if I go too far from home! I am far from being smart, I know all you e-moms think I am. Trust me, I have read thousands of studies and articles about epilepsy, regions of the brain, genes, seizure types and anything else I can get my eyes on. The better I understand things the better I deal with them. Regardless of the situation, I am not the “take two of these and call the doctor if you have a problem” kind of gal. Nah, I gotta know what to call this thing we are treating, research all I can about it, know what caused it and the name and every detail about that drug the Dr. just wrote on his script pad before I put in down any one’s throat! Epilepsy has been my weakness, I don’t know why it’s happening and in spite of the years of research. I still don’t know how to fix it or even what caused it. Brett’s journey has been much worse than Brynn’s. He has had months of sleeping 16-19 hours a day and even on good days he sleeps 12-14. His seizure counts in the last six months average 3 a day. He has a large variety: Tonic Clonic, Atonic, Complex Partial and Simple Partial/Aura’s. We still do not count any seizures that are shorter than a minute, unless they come in a cluster and count that as one. When his seizure counts were lowest, his quality of life poorer. Seizure counts higher and he lost endurance, balance, cognitive function and his laughter disappeared. Since his ammonia level and platelet level scare, we never have been able to find balance again. We lowered Depakote and saw an increase, went back up added Carnitine to try to help his ammonia level stay down that helped until a few weeks later he crashed again. We added Onfi, and I assumed that he would do well on it since Brynn has and hopefully get off one or more of the other meds. That didn’t happen. What a mess! His ammonia went back up and platelets down, so we weaned Depakote. All this while Brynn started having an increase of nocturnal seizures, the Tonics came back as did the myoclonic jerks. Saw a new neurologist who is a lot like the old one the boys favorite (Dr. D). He’s almost 3 hours away, but smart and no BS kind of guy. He increased both their VNS settings and put them on rapid cycling. He also increased Brett’s Onfi and Vimpat to see a small break and watch the counts rise again.  We decided to keep things as they are with Brynn, offsetting any meds may cause him to go back to where he was. It’s likely best to just stay where we are and appreciate where he is, less is best! He has stayed on the same doses of Fycompa, Vimpat and Onfi for two years now. Brynn has maintained his 40+ pound weight loss well. His confidence is up and he is staying active happily living back in the country again. He is 16 now, so we are awaiting his new IQ test results to have him placed in a transition program that will lead to special job training.  We all really like the new house and have been doing a lot of projects around with the really huge Hickory tree we had to have cut down! We are still heartbroken over the horrible service dog experience. Brett has been affected in many ways. Just the mention of Blue can throw him into a seizure. We adopted two dogs to try to help (Flash and Daisy) and while they are fun, they still do not make up for the loss of Blue due to her unstable temperament and aggressive tendency towards men. We put a complaint in with the BBB Here: http://www.bbb.org/atlanta/business-reviews/guard-dogs/guardian-of-the-night-k9-in-locust-grove-ga-27470394/complaints and the trainer didn’t even respond. We have given up on the service dog completely. Honestly, I don’t think Brett could handle the process again and I have doubts that he could bond with another dog like he did with Blue again. It’s a really horrible thing to have gone through, but we will do all we can to make sure this does not happen to anyone else. $5,800 is a lot of money to watch turn into nothing and there isn’t much you can do about it except sue, and loose better than half the money anyway. The Service Dog industry needs to be regulated and laws need to be made to make these deceptive “Trainers” accountable for what they are doing to families. It should be illegal for anyone who has not been through training and received certification to sell a service dog. We are not the only ones, I have been contacted by so many people who have had failed service dogs. I just wish they would have contacted us before I signed that contract! When you have done all you can do just stand and wait… We have gotten this far with God, and with Him all things are possible!

~Denise

 

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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!
 http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-2/?utm_medium=facebook&utm_source=NSDF+Blog&utm_campaign=Blog

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. 

http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-2/?utm_medium=facebook&utm_source=NSDF+Blog&utm_campaign=Blog

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Moved, Settled and been to the BIG city!

We have moved, settled… Been to the Biggest Children’s Hospital we have ever seen (3rd largest in the U.S.) and saw a new Epileptologist. We moved to Alabama, and have adjusted to a lot of changes pretty well so far. We are in the city, never lived in a city like this before! A big shock and change for us, having been primarily in the country for the last 20 years! Had a visit with a new Epileptologist, that was “interesting.” A bit different than what we have grown accustomed to.                           
Brynn and Brett will both be having PET scans, better MRI’s and 5-7 day Epilepsy Monitoring Unit EEG’s. Our last visit in New

Orleans, was bitter sweet. I really hated leaving the Neurologist that we all loved and we all knew he cared for the boys greatly. It will be good for the boys to have better testing done and we can only hope that through this we will get answers and prayerfully solutions. The boys were not very impressed with the new Dr., perhaps just a little sad about loosing what they were comfortable 
 with. I will remain positive and keep pushing through until the testing is done, and we feel the new facility out a little better. I did manage to get a copy of Brett’s 10 minute Complex Partial picked up in N.O.’s EMU, although it’s just the EEG and not him like I wanted.

 We successfully weaned Brynn of Zonegran and switched to Fycompa, a new drug. Brynn’s random jerks have returned, we are unsure if it is a seizure type or a side effect only the test will give that answer… He is overdue an EEG to look at activity/background , so it will be good to have another, and an extended EMU stay can catch so much more than a shorter stay too. The drawback is that it is outside their normal envirement, and sometimes that makes it harder to catch seizures.

Brynnon is still going strong, having his better than ever baseline of seizures. Not exactly sure whether to give the credit to the VNS or Onfi… or even both, but we are very grateful for the reduction! Brett, who had been doing a bit better seizure wise, developed heat intolerance and gets a fever when he goes outside. It is a side effect of Topamax so we added Lamictal and tried to wean the Topamax, only to see a return of the constant visual auras, tummy auras and the longer Complex Partials. We raised it back, but haven’t been able to get the same level of control yet. Brett is having somewhat of a good response to the medications he is currently taking. We are seeing a lot less fear involved in the seizures and they are much less dramatic. Actually, they are a lot like Brynnon’s daytime seizures now. Brett’s nighttime activity is still much better as well.
We have picked a trainer and are fund raising for a Seizure Service Dog. Her name is Blue! We were inspired to name her Blue after hearing the song Blue Does, By: Blue October.
She is a German Shepherd and will be trained by Guardian of the Night K9. She will be trained to alert for seizures, assist the boys when postictal and so many other things! We are pretty excited about Blue! We have already raised her deposit and only have $3,500 left to get her trained and home! I bet we will all sleep better with Blue in the house and finaly not feel on edge all the time! She will be an official, vested, certified ADI Service Dog and will go everywhere we go!  So, there ya go… an update! Short and sweet, just the way you like them!
As always, thanks for your Love, Prayers and Support!!
~Denise and Family


…………………….

     

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Epilepsy Awareness Day, March 26th!

It’s Almost Time!!!
Epilepsy Awareness Day is March 26th!!

What will YOU do to raise awareness?

  We went to our Children’s Appointment to meet with the Neurosurgeon who will do Brett’s VNS implant surgery this week. We brought Purple Bags with Purple Goodies (Lavender Awareness Ribbon Butter-mints, Wings of Hope Purple Ribbon Pens, White Purple Ribbon Grip Pens, Wings of Hope Purple Ribbon Calendar Cards)  to the Office Staff, our Neuro, the first Neuro Brett saw there, the Epileptologist who does the Video EEG testing and our most favorite Nurse ever who is so great and works hard for Brynn and Brett. I had a really cute Dr. and Nurse character made for our Neuro & Epilepsy Nurse. They are wonderful and are always there for us, always respond when we are in crisis, have a question or a need. They both go above and beyond what we could ever have imagined in care for our Epilepsy Warrior Boys, Brynn and Brett. The boys signed them and I wrote a card of thanks. We will be going out asking businesses to let us put up Brynn and Brett’s photos and giving out pens next week. I thought I would write about Epilepsy, as if I do not write enough about it!

Did you know that 1 in 26 people will develop Epilepsy in their lifetime?Did you know that there are many different types of seizures. Symptoms can vary from disruption of the senses lasting seconds, to short periods of unconsciousness to the full convulsions most people associate with Epilepsy.

Did you know that Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined? Historically, epilepsy research has been under-funded.  Each year NIH spends $30 billion of medical research, but only ½ of  1% is spent on epilepsy.

Did you know Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 34% of all sudden deaths in children?

Did you know Only in about 30% of cases is the cause of epilepsy determined. The other 70% remain unanswered, in what is referred to as idiopathic epilepsy?Did you know about 150,000 new cases of epilepsy will be diagnosed in the United States each year?Did you know early in the 19th century, people with severe epilepsy were cared for in asylums?

Did you know estimates are that up to 50,000 deaths occur annually in the U.S. from status epilepticus, Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes?

Did you know an estimated 3 million Americans and 65 million people worldwide currently live with epilepsy?Did you know the Greek philosopher Hippocrates was the first person to think that epilepsy starts in the brain (460-377 BC)?Did you know With the right AEDs, up to 70% of people with epilepsy could have their seizures controlled, leaving 30% uncontrollable/medically refractory?

Did you know in America, Epilepsy is as common as Breast Cancer, and takes as many lives?Did you know Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors?

Did you know the mortality rate among people with Epilepsy is two to three times higher than the general population?
Risk of sudden death among those with Epilepsy is twenty-four times greater.


Did you know about 30% of those diagnosed with Epilepsy are children?

Now that you know… We hope you will wear Purple or Lavender this March 26th and tell people about Epilepsy. Not just for Brynn and Brett, but for the 65 million people worldwide living with Epilepsy.
(((((hugs))))
~Denise, Brynn and Brett






prayeroffaith

Comfort through the why…

                                                          

2 Corinthians 1:3-7 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,  who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.  And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

At times in this Epilepsy journey, I find myself questioning WHY? Why do my boys have to suffer like this. It doesn’t seem fair that they have seizures, that they struggle to hold memories, that they struggle to learn. It doesn’t seem fair that we have to face every day, not knowing what the day will hold, not knowing at any moment when another seizure will hit. It doesn’t seem fair at all, I know it must not seem fair to them. As with most things in my life I struggle with, I think about what I would tell someone who came to me with the same struggle. The answer is simple… The Father is not going to give us all the same struggle, but every human being will struggle with something. I never imagined that we would be in this struggle. Life was so wonderful looking back, but I remember struggle then too. Of course looking back, I have to giggle at myself at the little stuff that I thought was so awful, so heavy, so overwhelming at the time. At the time it seemed like the worst, now it seems like it was no big deal. It’s about perspective. We hold the ability as humans to keep a positive or negative perspective. It’s difficult at times to keep a positive perspective, especially when you feel overwhelmed. The more you focus on the negative the bigger it seems and the greater difficulty you face in finding positive again. I am reminding myself daily, that the Father is still in control… and no matter how it looks or feels He has a plan. I look at Brynn and Brett, amazed at their strength and perseverance.

Surely, the Father has a wonderful plan for their lives. How many people will they be able to help years from now, who are struggling with seizures. They are true Warriors, Fighting Epilepsy one day and one seizure at a time. What a wonderful testimony they will have, to stand firm one day and tell their stories.
Brett received a lovely Hernando Bear to comfort him during his VNS implant surgery and healing. It was sponsored by: Angels 4 Epilepsy, TG Bears and donations by group members. He will be going in less than two weeks to meet with the neurosurgeon about his VNS implant surgery. Brynn had his implanted on Oct. 25, 2012, we believe it has helped reduce the number of seizures that generalize and perhaps even reduce his postictal lengths as well. We feel it is a good option for Brett too and should be at least somewhat beneficial. Brynn has recently had either a return  of daytime seizures or an awakening to realize they are happening, no way to know really. It’s new for him to “know and express” that he has had a seizure. He has remained somewhat stable over the past several months. Staying at the baseline of

2-4 seizures a week. Brett is still on a roller coaster, having one, two or clusters of 6 or more almost daily. Both boys now have the diagnosis of Refractory Cryptogenic Focal Epilepsy. (Meaning they have a cause that is unidentified, are resistant to medical treatment and have focus areas where the seizures start)The Courtagen Epilepsy Panel revealed no answers as to the cause of Brett and we assume Brynn’s Epilepsy cause. We obtained and are now using seizure journals from the National Seizure Disorders Foundation (the Foundation that is sponsoring Brynn & Brett’s Seizure Service Dogs fund raising). They are beautiful and make seizure journaling so much easier than our printed pages, which were hard to keep together! They can be found here, if anyone is interested:
http://nationalseizuredisordersfoundation.org/my-seizure-journal-2014/
….Back to the scripture I started with. I think people may assume that when it says comfort, that it means rescue. The Father comforts us by encouraging, strengthening you and giving you hope. When you come out on the other side you will be able to comfort others.  I hope that you will be comforted, in whatever struggle you are going through. I hope that through Brynn and Brett’s Epilepsy Journey, we will always find a way to see the good and focus on the positive. I HOPE for the day that we can comfort others in the same path, having overcame the struggle, the pain and the uncertainty of Epilepsy. We must remain steadfast in faith, that one day, videos like this one will no longer be recorded our home.   


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prayeroffaith

Fast Forward Realities…

It is with a heavy heart that I sit to write this blog update.  A lot has happened since my last post so I will try to catch up with pictures as I give the most recent update on Brett.

                                               

We had a wonderful Hanukkah! Abigail really enjoyed it this year and even helped light the candles. The Boys both enjoyed the Epilepsy Awareness in Disneyland bears and T-shirts that I got them! They both love their new cool beanie helmets I got them!  Last year at this time I was seeing cognitive decline in Brett, behaviors similar to Brynnon’s in Brett. I saw an increase in what I could only describe as extreme emotional outburst for no known reason and he

couldn’t explain it either. He would say things like he couldn’t see the words while Reading or he didn’t know how to borrow or carry in Math. A bright boy since birth, Brett was struggling to work at grade level when a year prior he was a year ahead. I tried to see it for what it wasn’t as long as I could. I had been catching events that looked like seizures in Brett for a few years while recording Brynn.

After being told by the Pediatrician he was faking seizures and peeing himself for attention, it eventually became easier to believe her, than to even think it really was seizures. One night while watching a movie Brett fell asleep. He got up and was completely blank looking. He stood and was making hand motions like he was touching something. I watched, tried to talk to him with no response and thought, well whatever that is it’s not normal. I researched… and I finally came to the conclusion it could be seizures and that Dr. was wrong or it could be Parasomnias. Ah, yeah

Parasomnias make more sense and the cognitive decline likely just the effects of having so much go on in his sleep. I took him to a local Family Physician showed her a few videos and said I am not saying these are seizures, but they are similar to what Brynn does, maybe they are Parasomnias. She agreed and thankfully Brett was referred to Children’s. We went for the first visit and I think I may have been the only person who saw the video there that was convinced that it was Parasomnias. He had a sleep deprived video EEG and was diagnosed with Epilepsy in September. He started Keppra, which caused horrible rage and anger. 

We switched to Trileptal and over time it did seem to help his daytime become a little better. I did not see much change in his nighttime. We went to his first visit with Brynn’s neuro Oct. 1st, and at that visit he said he would not wait until he is maxed out on five drugs to consider Epilepsy Surgery and that he was concerned about genetics.

All of a sudden, just when I got comfortable a few weeks later, he became very verbal about what was happening to him visually. All those crazy symptoms he had complained about blurred vision, altered perception of what he was seeing, altered sizes of things, his vision moving…

The more questions I asked, the clearer the picture became. I reported these things to the Neuro. It was decided that he needed another medication added, so we added Topamax. The dose was to be 25 mg AM & 100 mg PM to avoid any further problems in his schooling. It was great at first, he slept soundly and peacefully more nights.                                                                                                         

His daytime seemed much better… but over the next few weeks my life became a whirlwind. Brett started having bigger daytime events that terrorized him and everyone who saw it. I did not know if he was loosing contact with reality or having symptoms of a terrible mental disorder… 
but he started having something happen after the Complex Partials that I did not know could happen.

TERROR, Irrational Fear, Screaming, Wandering and if being restrained or stopped RUNNING. We started recording the events on the third day. Something was happening that never happened before. I called the Neuro to report these events after I researched and figured out that the fear could be part of the Complex Partials. I suggested that perhaps the daytime dose being so much lower wasn’t protecting him well enough in the daytime, because now his nighttime events had disappeared. The neuro agreed and we doubled the daytime dose. After a few days it was evident it was helping some. I called again and was told to go ahead and get the doses even. It spaced out the events for several days.

Then as if nothing had changed it went back to every day. I decided the best action I could take was to request the neuro watch the videos. After he viewed them, it was decided that we needed to take action and have him go in for an extended EEG to see if he could be a possible brain surgery candidate. We returned home yesterday from Brett’s first Children’s Hospital admission. Brett had a seizure while being hooked up to the EEG leads, which made me think that may be a wasted visit. I did have the nurse that helped keep him on the table as well as the EEG Tech witness what happened, but I knew without it being on EEG it wasn’t enough.

That first day while hooked up he had a few auras that I didn’t push the button for. That night he was a teeny bit restless but not anything to push the button for. The next morning he got his breakfast tray and was not excited about that bagel he asked for once he saw it. He picked at the bagel and the rest of his tray. A bit later he asked when is lunch… at 10:30 lunch is a bit far away for a growing boy, so I offered to go buy him one of those Red Baron personal pizzas out the machine downstairs. After asking him if he was sure he didn‘t have the vision thing or feel like he was going to have a seizure, I asked his nurse if she could

keep an eye on him and she agreed. I waited for a while for the elevator, and eventually made it down. I anxiously looked for it… the shiny package that he wanted… Cheesy goodness, there it was! The machine wouldn’t take my debit card so I scrounged up a few bucks from my wallet. I grabbed a Green Tea for myself and was out of there… a guy called Ma’am your change! I grabbed that and again was on my way. Made it back up… and found the Nurse next to Brett in an obvious seizure… tears in running down his face… I spoke to him and he had that fearful look…

My little boy was lost,  completely lost. Didn’t know where he was or even who I was. I told the nurse he is having a seizure, pushed the button… Dr. M came in soon after and asked if that was a typical seizure. I didn’t see onset, but knew by the last part I saw it likely was, other than he didn’t try to get out the bed or take the wires off. So she said she would look it over and if it was enough, we may be able to leave.It seemed like forever before she came back. When she did she said you never want a neurologist to say your child is fascinating, but his seizures are very fascinating. He appears to be a good brain surgery candidate based on that seizure and it was such a good example she

will be using it in the future. She totally got how it was diagnosed as “Night Terrors” and how it was confusing to me that it could be a seizure, because his awareness comes and goes. It’s an unusual etiology and the progression of the seizure was very unusual. With the amount of Auras he was having she suggested that we stay the extra night and try to capture more.

I was done, and felt like I needed to go home. So I opted to do just that. So… all those crazy visual symptoms are Simple Partial seizures confirmed by EEG, as well as the Complex Partial seizures confirmed. She confirmed as well that a seizure he had a few days prior with jerking in both legs that eventually became whole body jerking was indeed a Tonic Clonic. He had the Right side only jerking every now and again at night and eventually during the day. When the seizure focus goes off it in the Occipital Lobe it moves to the Left Visual Assoc. Cortex causing the crazy Visual symptoms. At that point it is considered a Simple Partial seizure. It it keeps going and shoots through his Temporal Lobe causing the fear, euphoria and

more obvious Complex Partial it is considered an Aura. An Aura is a sign that a bigger seizure in coming experienced by much of the people with Temporal Lobe seizures. When his right side starts jerking it has spread through to the Motor strip and that time it was both sides jerking it had generalized (spread to the other side of the brain) into a Tonic Clonic. It is a good thing to have answers and know that there are options. I still have a lot of questions before Brett will be having Brain Surgery. The main question is Genetics. I cannot

think that it is “bad luck” as she put it. It’s too much like Brynnon. Both boys have the same genetic makeup, you can see it by looking at them, by the seizure type and progression and by so many other signs.  I think it would be very traumatic to have Brett go through Brain Surgery, and it is a step I am not willing to even consider without genetic testing. Brynn only had one Focal area at one time, now he has three. So in my mind, why would you go through that kind of trauma and hope for seizure freedom if eventually it will return and what if it is worse?

I don’t think I have the courage to even explore the surgical option without knowing a whole lot more. Whatever happens, I know without a doubt that our Abba Father is in control. No matter how it looks or feels, I have full confidence that Abba Father has Brynn and Brett in his hands and they are perfectly made.

The beanie Helmets I got the boys are from:
http://crasche.com/
The Cute bear Brett has with him at the hospital was a gift from CeCe Cares:
https://www.cececares.org/

The wonderful totes, bears and awesome T-Shirts came from:
http://www.epilepsyawarenessday.org/

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prayeroffaith

Endurance

Waiting… I never really enjoyed waiting. I admit, I use to be better at it too. I remember people use to say “Denise, you have the patience of a saint.” Just words, but I must have been given a great gift of patience. I have to work harder now at Patience, because I feel I lack something, Endurance…  I get anxious now waiting. I feel like I do not have the strength to wait things out.

When you have a child with refractory epilepsy, so much waiting is required. No matter how much patience you think you have, watching your child have a seizure will make you feel like you do not have the endurance to go on…
You start this medicine with so much hope that it will make the seizures stop. It does, for a while and another is added when things get out of control…               On and on this process goes…

 Finally one day the Dr. says, this may be the best we get. We did the VNS surgery for this reason. The medications tend to help Brynn honeymoon for a time, but once again his body just gets use to it or learns how to seize despite the medication. So, we did the surgery with the hope that he would do better than the one third chance of a 50% reduction in seizures…. and we wait… and wait… Did you know that in training for endurance, you could end up with a negative impact on strength if you do not also practice resistance training. Waiting in faith is like training and without prayer we too would end up weak. The boys and I pray every night for Brynn and all the children and adults we know that have seizures to not have seizures anymore. We praise Abba Father that one of them has stopped having seizures and a few others improved! This has encouraged our faith once again and helped me to become stronger… and continue to endure! We weaned one medication and started a new medicine… and waited some more.  And…. Once again, we have a honeymoon! Yes, Brynn is back to baseline and better with the Onfi! He is not having Tonic Clonic the moment and the Tonics and Complex Partials are so much less traumatic! This honeymoon started out great, fizzed out and then came back full force it seems! We are so excited and enjoying this time! We started fund raising to get Brynn a SAMi Seizure Alert Monitor Camera System. Brynn and Brett always being find of Survival Bracelets wanted to make them. So we bought the 550 Parachute cord in fun colors and got to learning! Brynn and Brett like to try, but they haven’t mastered the art of making

them… So at present I have made oh about 70 of them!  Saving and Hope to buy him a Recumbent bike soon too! After he had the seizure while riding the bicycle he has been heartbroken that the neuro said no more bike riding. He has only been able to ride his 4-wheeler once so far. The recumbent bike sits low to the ground, has three wheels and in the event he has a seizure while riding at least he will be close to the ground and not fall over… We even had a Lemonade Stand for the first time last Sunday! The boys had so much fun and raised $20 for the SAMi fund!!

So here we are again, waiting… and being patient… Knowing ever still that Abba Father is in complete control… It will be as it will be, in HIS time and only then… Not the easy fun we had hoped for, but you know… at least we are having some fun along the way!!
Ah, indeed…
The longer you wait the better it is!!

Don’t Ever Doubt It,
Abba Father Knows ALL!!