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!! 

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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

Children’s trip update


Brynn’s appointment went well. Dr. Einstein was there today after he sent the Intern in… I gave a good lecture to the Intern who will become a Pediatrician soon. Explained to her that Brynn should have been diagnosed at two years of age or even earlier. Explained that his symptoms were overlooked and explained with “Night Terrors, Infant Gas, Articulation Disorder ect.) Told her that I made a promise to myself that I would tell this to every Intern and Pediatrician I come in contact with. If someone would have listened to me many years ago we could have helped him a lot sooner. We are going to schedule a trip down to chat with Surgeon about VNS and set the VNS implant surgery date. He thinks it will be a valuable tool for Brynn, but cautioned me on thinking it is a cure for him. He said we can Hope for a 50% reduction, but he doesn’t expect it to be that for Brynn. I appreciated his honesty. I expressed my fear of the future and said I want it because I want to have any tool that could potentially stop status, he understood and agreed that it is important to have any available tool to help Brynn.

Brynn 12 Brett7

He said because he is Refractory and failed so many meds he doesn’t see him being seizure free, but it is important to only do one change at a time. By the way, if he has failed so many, why is still on all the failed ones except Trileptal? We are going up to 400 mg on Zonegran. We’ll keep the Depakene at 1,250 mg twice daily, Vimpat 200 mg twice daily and Klonopin .5. Once Brynn gets back and stays at his baseline average of four seizures a week for a while we will try to wean Depakene and introduce Onfi, since Brynn’s brain seems to like Benzo’s. While doing the Neurological exam he noticed the small seizures I have been asking about for two years now, asked me if I noticed him spacing out… Told him he has always done it, he said he didn’t notice it before. Told him I call it checking out, that sometimes he goes back to what he was doing, sometimes he doesn’t remember what he was doing.

Tera 22, Abigail 2 and Brynn 12

Of course this is probably seizure activity that we cannot see and he said once we get the big ones under control we need to work on those as surely they effect his daily function. So thankful he noticed them… His Neuropsychological report from a year ago questions is this is happening because he noticed it while spending time with Brynn. His 3 day EEG even mentions seizure spikes with no clinical signs. So, productive visit for Brynn… many more questions for Mom… Still feeling insecure about all this, as I don’t feel like my Brynn is safe. I still daily fight fear of what if, when and why. On the why, we talked about that too. He said he just doesn’t feel like we will get anything back from genetic

Brandon 17, Abigail 2

testing. Even if we did it would not change anything. I said well at least I would know WHAT it is. He said we cannot go in and rewire his brain, it’s just not wired correctly. There is not easy fix here and having a name for it is not going to change it. I disagree, but respect and understand his opinion as a physician. I am in hopes that increasing the Zonegran will bring positive changes… and I am looking forward to ANY change for the better that the VNS will give Brynn. He suggested I wait on the Neuropsychological re-testing, as he needs to be in better Neurological shape for it to be accurate, to see where he is in comparison to his baseline cognitive function before that horrible seizure that took away two years. He looked at the 2006, 2009, 2010, 2011 & 2012 writing samples from Brynn’s home school. He wouldn’t talk about regression, says it’s Cognitive Disability. Not looking forward to that trip again, but perhaps we can get a room next time and actually visit family. There is always Ronald McDonald house for the Surgery day. Here’s to HOPE… and lots of it! It’s all in YHVH’s hands anyway, what do they know… I got a message while at the Dr. and my phone was off. The buyers for our property were approved for the loan, so looks like we will be moving really soon… No idea where, LOL It’s all in the Father’s hands… Don’t want to make any more poor decisions like we did coming here. We will walk away with considerably less than our down payment… and loose all other funds we spent getting Bri’s room built and so on… Oh well, live and learn… boy did we! Kind of excited about what the future could bring… ~Denise