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

Blessings and update on Brynn and Brett

We visited the new neurologist yesterday. My head is still swimming with all the information that we were given in just one visit. Abigail and I went to to the back pretty quickly for her EEG and Brandon, Brynn and Brett waited in the waiting room. Not long after being back there with her, a nurse came to tell me that Brett was having seizures. He apparently had a cluster of Complex Partial seizures.

 I waited for Abigail's EEG to get started good and asked if I could go check on Brett. I found him with several people, nurses and people that worked there. They were sitting next to him, standing by him and talking to him. I later learned that they didn't just sit by him and talk to him. They snapped their fingers and clapped loudly in his face to be sure that he was not conscious. This is important in partial seizure as a Simple Partial you are aware and a

Complex Partial you are not aware. Other than being in the hospital or home, no one had ever assisted us before during a seizure. I am sure it was a good learning experience for all the people that were there and saw it. By the time Abigail's EEG was completed they had put Brett in a wheel chair and brought them to meet us to get weight, measured and talk to the nutritionist. We then gathered in a large room with the Doctor, 4 Nurses, the EEG Tech, Abigail, Brandon, Brynn, Brett and I. Brett was first and it was obvious that he needed some changes since he had the cluster there. We talked about Brett's hospital admission to the EMU for 6 days. I told him that I felt that Dr. made him worse by messing with his medications. He has not been the same since he crashed the night before discharge. He slept 10 hours his last night there. Slept through discharge, including having the wires removed and had to get to the vehicle by wheelchair because he could not walk at all. He slept four hours after on the way home.

He started having a new seizure type after he got home, was having tons of little seizures that would only stop with Ativan and would return. His stomach aura was much worse and he was generally off balance and completely not with us most of the time for a few weeks. In the six weeks since he was discharged he was a lot worse than he was in the six weeks before he went. He really felt that the Lamictal could actually be causing the Topamax to not work

as effectively or that the Lamictal may not be a good drug choice for Brett. So we decided to add Depakote, since Brynn had a good response on it for so long. We talked about how Brynn and Brett respond so well to Benzo's and even how odd it is that Brynn and Brett both tend to not get sleepy after given a Benzo. He asked curiously how Brynn responded after he started Vimpat. I told him I have a video, that Brynn was so awake and alert after starting Vimpat that we were amazed! Turns out that people that respond like they do to Benzos often have the same response from Vimpat. It has to do with brain chemistry and Vimpat is likely going to be really good for Brett like it was for Brynn. 

He even talked about the extreme Keppra rage Brett experienced and said that people with their kind of brain chemistry actually are the ones to usually have that effect from Keppra, just so much hyper aware that it has a very negative impact of their functioning. So right off the bat I got an answer to a question I had pondered so many times! So of course we decided to try adding Vimpat instead of Depakote for Brett and we agreed that Onfi should be next. We talked about Brett's Left eye and how it often kicks out

and gets stuck before and after seizures. He was very educated about what could be the cause of this and he called the eyes bouncing up and down and side to side Nystagmus and said that he also has ataxia. He went in to great detail (a lot of it was over my head) after I came home I did research the words he used and figured it out, Cerebellar Ataxia. I realized after researching that the Nystagmus is actually a symptom of

 it, so is double vision. Boom, another mystery answered! Abigail was next, her EEG was normal and we decided that if I became concerned I could contact him and request a 24 hour or longer study. He felt strongly that whatever we are dealing with is a rare syndrome passed on from me to the boys. He said that the video of Abigail really could be parasomnias. 

I felt that since she was not wetting herself like the boys did and since I had not seen any real evidence of activity while awake I would just keep watching her. Brynn was next, we talked about Brynnon's history and we talked about how Brynnon has been doing so well, having an average of only 1-3 seizures a week is so great for him considering his past history. 

I stressed that I wanted to leave things exactly as they are and he agreed. As we were finishing up with Brynn Brett bounced back a bit from the seizure cluster and started to play, rolling around in the wheel chair. We both smiled and I said, see... now that his postictal phase is almost over you get to see the real Brett! He shook his head and said that is really shocking that he can function so well on that high a dose of Topamax. So all in all, that was the best visit we have had in a long time. My heart is in New Orleans with their prior Neuro, but considering where Brett is on the seizure journey and the 5 hour drive for care... my head says it is safe enough to stick with this one. So, that is what we will do! 

  So after this really neat experience, I must say that is our closest experience to "The Village" that we have ever experienced. I recently read this book by Lowel Evans. I realized as I was reading it that "The Village" is what has been missing in our lives. You know it's sad in this day and time, people rarely take time to call, write or contact people in any way. Even families have so much less contact than previous generations. Epilepsy is a stigmatized, unknown and misunderstood condition to begin with. If you take a family like mine and throw epilepsy in, well you end up feeling like you are all alone!

Since my Mother was murdered in 91', we homeschool and we moved for work so many times our children have missed out on a lot. We haven't really had the "family" like most people do for most of my children's lives. I have six children and I can count on one hand the times that my children have had birthday parties where people attended. I can also count on two fingers how many times the boys were hospitalized and someone visited them. The Village concept is one that people reach out and help each other. Not

necessarily with money but just general support when people are going through hard times or trials. The Village is the community that the character in the story lives in and when he is targeted for having Epilepsy at his job, the village all comes together and helps him not only get through the hard time in his life but they help him feel loved and wanted. You can read about the book and get a copy  here:   http://thevillageiscoming.blogspot.com/

  So, The Village book got me thinking how much it is needed for the Epilepsy Community to reach the outsiders to educate them and the outsiders to reach them to support them. We started seeing some of this concept in our own lives when a friend donated to make Blue's deposit possible. Through the small donations given by a few people we kept the hope.

Through the donation from a Rowan Company of $500 we were amazed! Blue's balance dropped to $2,500 after that generous donation! KONG sending the boys a box filled with goodies for Blue, People sending messages to check on the boys, my sweet friend and her husband praying for the boys and donating, finding out that the Church you use to attend 20 years ago has taken up donations for Blue... All of this is The Village

concept in real life. I can't describe what a blessing it is to know that people want to reach out to Brynn and Brett. I just wanted to say how grateful we are to those that have helped us get closer to getting Blue home! It means so much to Brynn, Brett and our family! She will likely be ready around February, and we believe that the funds will come... that the village will come together and get Blue home!

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~Colossians 3:15-20 - And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful.  
~Ephesians 1:16-18 - Cease not to give thanks for you, making mention of you in my prayers... 

Got Patience?

What is patience? 

"The quality of being patient, as 

the bearing of provocation, 

annoyance, misfortune, or pain, 

without complaint, loss of temper, 

irritation, or the like." 

My Momma use to tell me I had the 

patience of a saint... I never really knew 

what she meant, but I sure do now....  

I have had many lessons in patience. I was born graced with more patience than most people I know. Also like most people I know, I find as I get older my patience gets a little thinner.  I have had to practice a lot of patience in my life. I have to admit though, I often feel that I have had more than my fair share of the testing of my patience. I can say for certain that I have grown and learned many lessons from practicing being patient. One of my favorite sayings is, "The longer you wait the better it is." I often use this when speaking to others about patience. I know in my life, the things I have really longed for, really prayed for and anxiously awaited for in anticipation... Those are the things that I really appreciated, really enjoyed and really cherished. These past few months I have seen a glimpse of a few of those things I had been patient for...  Blue, our Seizure Service Dog's name being chosen and at last a dream came true was put in motion. 

A dear friend who I met on Craigslist, of all places, gave a wonderful miraculous gift of $1,000 to get Blue's deposit paid so she could start training! When I think back of how we met and how we became closer than most people I have in my life...

I just have to chuckle and just shake my head in awe of it all. It was after all during the breast cancer scare while pregnant with Abigail that we met.  We actually met for the first time in the hospital parking lot. She had responded to an ad I placed on craigslist looking to buy a baby swing. She had the very swing I wanted and also gave me lots of

burping clothes, a bouncy seat, bibs and other items as well. It was a dream come true, the very "cradle swing" I had oohhed and aahhed over! Over the next few weeks we chatted on facebook and became online friends. Eventually, we exchanged phone numbers and became the greatest "night owl" phone friends ever! I was blessed to have her family

come for a visit recently. Indeed, this was only the second time we actually "saw" each other. Over that four year period we had formed a friendship that was stronger than most of my lifelong friendships. It was as if we had known each other our whole lives... Our entire families gelled together like long lost cousins. It was amazing, to look back and know that this one of a kind friendship has to be a "God thing!" 

Just before her visit Brynn had a seizure that caused him to fall. He injured his knee so I took him to the ER. The ER referred him to an orthopedic surgeon who said he needed an MRI. After a week of trying to figure out how to do this with the VNS, it was determined that he can only have a MRI at Children's Hospital. The VNS has to be turned off for any MRI. His Daddy took him to Children's to see another Orthopedic Surgeon who took better X-Rays and determined that he does have a torn ligament and his kneecap is also out 

of place. He has it braced now and does daily excersises to try to get the kneecap back where it belongs. If it doesn't he will have to have surgery. The week Prior to her visit and the week of her visit the boys had their PET scans and MRI test done. Brett developed Petechiae a day or two after each test was done only on his forearms. I couldn't get answers from the Hospital nurses or Radiology staff and took him to two Doctors seeking answers.

We never did get a definitive answer as to why, except that it may be his med combo causing his capillaries to be weakened and make him prone to bruising. The boys will both go soon for a 5-7 day EMU stay. We hope that we will get some answers from these new test at the new hospital. Brynn has done relatively well the past several months. He has experienced a seizure decline over all, and when he does have them they are generally less dramatic. He is also somewhat stable cognitively, compared to how he has been in the past. We

hope that this will continue! Brett has had a lot less Complex Partial Seizures that spread into his Temporal Lobe causing the extreme euphoria and fear. It is much easier to deal with the seizures when they are not scary for everyone else in the house. We have seen a decrease in daytime seizures overall, but they still tend to cluster when they do appear in

multiples of 2-4 a day. His visual auras/Simple Partials are persistent and no longer seem to respond to the Topamax. We did initially try to wean the Topamax due to Heat Intolerance, but quickly discovered that it caused his vision to become so poor with flipping images/double vision he couldn't really

see at all. After increasing it back, he never fully regained control of that seizure type again for more than a few hours at a time. Just this week we finally were blessed with the amazing gift of love that we have wanted for two years now! The SAMi Monitors are here! 

They were given to the boys through the Chelsea Hutshison Foundation. I donated what we had left of the money raised with bracelet sales. I hope to be able to donate more soon. It is a wonderful foundation that is helping so many children with seizure disorders! I knew within two 

hours of the SAMi's being on that this is a miracle, when it actually alarmed to a Tonic Seizure Brynn had while taking a nap. Such a wonderful feeling of peace, knowing that the SAMi's are watching the boys too while they sleep! Now, back to that patience thing... 
Most people when talking about patience think it just means waiting. It's not really about just

waiting, it is waiting while not exhibiting complaining and showing your frustration with not having what you want NOW. I know full well what Momma was talking about at this point in my life. It is seldom easy to wait for something that you need at this moment and not

get frustrated and complain. Especially when it is something that your child needs, like answers to medical problems or just a matter of being set free from something that is hurting them. In this seizure journey, my patience has been tested almost daily. I recently was thinking about patience and Momma saying I had the patience of a saint. I think I too had fallen prey to the

overwhelming desire to complain about how unfair things are in my life. How unfair it is that the boys have Epilepsy, that medications are not making them seizure free... and that is when I realized that I had become like the children in the wilderness... bickering and complaining... It's very difficult to watch your child have seizures and practice being patient. All too easy to become frustrated with

not getting answers and the solutions to make these seizures stop. It was then that I realized, it's not just waiting... It's waiting knowing that it may never come. It's waiting, believing and hoping that it will come... and knowing that our Father is in control and at the right time, perhaps it too will come! Until then, I will keep practicing being patient and like Abigail... Just keep smiling and singing joyfully, knowing that it will come! When I feel the temptation to become inpatient, I think about the children of Israel. They were right there and bickered and complained so much they just stretched out their time waiting... I am amazed when I think about how far we have come. A year ago, I never would have thought we would have a Seizure Service Dog in training and Two SAMi Monitors! GOD IS GOOD!

Please find is at Facebook.com/EpilepsyWarriorBoys to help being Blue home to help Brynn and Brett fight this Epilepsy Battle...  We do not own or claim to own the song used. The song is Blue Does By: Blue October. It is the inspiration that gave Blue her name! Please help being Blue home!!!! Donations cane be made here:
http://youcaring.com/EpilepsyWarriorBoys
Or for tax exempt donations through our sponsor, NSDF, a  501(c)3 non-profit Here:
http://nationalseizuredisordersfoundation.org/brothers-winning-the-battle-of-seizure-disorder/
*Please be sure to note that the donation is for the "Epilepsy Warrior Boys" and let us know you donated!

Hebrews 6:11-12 And we desire each one of you to show the same earnestness to have the full assurance of hope until the end, so that you may not be sluggish, but imitators of those who through faith and patience inherit the promises.