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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Abba Father is always faithful…

  The past few weeks have been filled with so many different emotions. The strength and endurance that only faith can bring, remained constant and persistent, I am ever so grateful for the peace that only Abba Father gives, remaining steadfast in my heart, regardless of how things look or how they feel. Regardless of the fear that comes… the thoughts that race through my mind… Abba Father is always faithful… 

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*´¯`*•.¸He who dwells in the shelter of the Most High will abide in the shadow of the Almighty.  I will say to the LORD, “My refuge and my fortress, my God, in whom I trust.” ~Psalms 91:1,2´¯`*•.¸¸…¸
 

Brett’s seizures have persisted during the day, then went back to just at night, then they balanced out to both night and day seizures. It has been difficult for the entire family, a whole new experience of not knowing when they will hit. Not knowing if the Simple Partial visual symptoms will stay, go away or continue to a Complex Partial. He experienced a dramatic increase on Sunday and had to be taken to the Emergency Room after having 3 long Complex Partials followed by 4 back to back with little or no recovery in between. He had seizures continue on the way to the hospital and while in the Emergency Room. Our oldest Son was with us and counted 14 seizures… Ativan was given for the first time to help stop the clustering, thankfully it worked. The after effects were terrible, bouts of crying that were hard to determine if they were repetitive seizures or after shocks in his brain from all the seizures. Abba Father is always faithful…


¸…¸*´¯`*•.¸Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. ~Proverbs 3:5,6´¯`*•.¸¸…¸


Monday, we went to Children’s and he was still in a pretty bad postictal state. Off balance, confused, irritable, extreme sensory sensitive… That visit was a good one, we made tremendous progress. Neuro agrees, Brett is likely multifocal, since I have video showing Left side posturing with Complex Partial onset as well as Right side. The decision was made to go forward with the VNS implant like Brynn has. Abba Father is always faithful…

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*´¯`*•.¸“Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.” ~Matthew 11:28-30
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YES, We Will DO Genetic Testing Before even considering brain surgery again. Brett was chosen by his neuro to be the patient that gets a complimentary genetic Epilepsy Panel done. We have been blessed by Brynn and Brett’s neuro in that he chose Brett to get the test. This was far away from our reach, very costly and our insurance would not cover it. This is a miracle for us to have this opportunity, just when I had made my mind up that it had to be done as soon as possible. I was so amazed by how this worked out perfectly, as usual just in time as Abba Father always does things… Just when you are about to throw your arms up in complete frustration and despair. Abba Father is always faithful…

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•*´¯`*•.¸But you, O Lord, are a compassionate; gracious God, slow to anger, abounding in love & faithfulness. ~Psalm 86:15´¯`*•.¸¸…¸


Brynn has remained so stable over the past several months. He is now staying at baseline some weeks better, only averaging 3-4 seizures a week. Even a bigger wonderful blessing, he has only had ONE Tonic Clonic Seizure in the past 3 months and only averaging ONE Tonic Seizure a month. He has remained stable long enough to conclude that the medicine combo and the VNS is keeping him more stable than he has been in a long time.  Abba Father is always faithful…

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May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. ~Romans 15:13´¯`*•.¸¸…¸

Brynn, Brett & Abigail ~May 2010~

What a journey this has been over the last several years…
Thinking back it is difficult, Brett is the same age that Brynn was when he entered the seizure sick  world. Both
boys were born in October. It was January 25, 2009 the first time Brynn went to the ER after his first recognized 10+ minute Tonic Clonic seizure. Here Brett is, same chronicological age as Brynn was in the same month… and his seizures are worse than they have ever been. I do not believe in coincidence and there is no such thing as “bad luck,” I hope that we will have answers soon through that test for my blond hair, blue eyed boys that have so many similarities
Abba Father is always faithful…

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*´¯`*•.¸Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. ~James 1:2-4´¯`*•.¸¸…¸

I made a video for awareness of Complex Partial Seizures, since Brett’s are unusual and I had a hard time finding a video that showed a seizure anything like his. I hope it will bring awareness to this type of seizure and will help others who may be looking for answers, and knowing that you are not alone! Abba Father is always faithful…

http://www.youtube.com/watch?v=_orIXJ8CrbA


¸…¸•*´¯`*•.¸For ye have not received the spirit of bondage again to fear; but ye have received the Spirit of adoption, whereby we cry, Abba, Father. ~Romans 8:15´¯`*•.¸¸…¸

Brynn, Brett & Abigail ~January 2014~

So, after that exhausting Sunday filled with seizures, Monday filled with 5 hours of driving, both boys seeing the neuro, Brett being so postictal, the joy of knowing Brett would have a genetic test done, the uncertainty of why his seizures are so out of control… and the decision to do the VNS… This Momma was done! I was just at the end of my rope and so exhausted…. Abba Father is always faithful…


¸…¸•*´¯`*•.¸A merryheart doeth good like a medicine: but a broken spirit drieth the bones. ~Proverbs 17:21-23´¯`*•.¸¸…¸
Then Tuesday… Your never going to guess what happened! The National Seizures Disorder Foundation‘s Founder, Tonya sent me a link for the boys… She is sponsoring a fund raising campaign to raise the money for the boys to get their very own Seizure Alert Response Service Dogs! This is going to require a lot of work, and prayerfully, a lot of help from a lot of people… What a blessing indeed… and yes, just when your at the end of your rope… Abba Father is always faithful… Very grateful and feeling so blessed! However, for the first time ever I BELIEVE it not only Can Happen, but IT WILL HAPPEN! Can you help?? Here is the link, please share! Abba Father is always faithful…

http://nationalseizuredisordersfoundation.org/brothers-winning-the-battle-of-seizure-disorder/

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¸…¸*´¯`*•.¸You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the LORD forever, for the LORD GOD is an everlasting rock. ~Isaiah 26:3,4´¯`*•.¸¸…¸