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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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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