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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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Year end quick wrap up!

I didn’t realize it had been so long since I have posted an update. October, November and December have proven to be just as much a Epilepsy Roller Coaster as the prior months… well years. We have seen Brynn do so much better and have just a few small                                                   bumps of loss in seizure control.

All in all, I would still say that he is better than he has been in years. Brett on the other hand seems to gain some control and in a matter of hours, days or weeks crashes again. Brynn and Brett will see a geneticist in January.                                        We are hoping that we will have some answers from that appointment instead of more questions, like the previous Epilepsy Panel. The Geneticist hopefully can answer some of  

the questions about the two unknown mutations that came back on Brett’s previous Panel. (varients of unknown signifigance are 1.) heterozygous for late onset multiple carboxylase def w/biotinidase def p.G1n88Glu 2.) lysomsomal storage disease ds aspartylglucosaminuria p.Leu146Val)
The new Neuro does believe that they have a male dominant, female carried rare genetic female carried epilepsy syndrome similar to LGS.    We returned to the Seizure clinic this 

month, and were referred to the seating clinic to order a bath chair. I brought Brett’s wheelchair to ask for a seat belt to be ordered. What a blessing they had one and started installing it right then! Unfortunately, Brett went into a Complex Partial seizure while it was being installed. With no break in between after several minutes the Complex Partial generalized into a Tonic Clonic.

911 was called after about 5 or so minutes. The nurse estimated that the Tonic Clonic seizure lasted about 8 minutes. He went to a postictal like state for about two minutes and then his eyes popped open into another seizure he went. Second Complex Partial that also went into a Tonic Clonic. It took an hour before Brett arrived in postictal state by ambulance to the ER. ER was over filled and the hall was being used to treat immediate cases. We

stayed there until he slept it off and awakened hungry and ready to go home. I got a prescription from the ER Dr. for Nasal Versed after he asked why I didn’t have his Diastat on me. I explained that I usually do not carry Diastat when I am fairly close to home, we really do not leave the house often anyway and when we do we are going to the Dr. anyway!

In the off chance we do get to take Brett to a store or restaurant he is 10, weighs close to 100 pounds and I would rather call 911 than try to get his pants down and administer Diastat in that situation in front of so many people. In hindsight, I feel terribly guilty that I did not have any emergency medication on me. I had no idea that it could take so long for Paramedics to get to us in this big huge city either. My thinking will change, once

again and I am sure my anxiety will not get any better either about leaving home with Brett and without Brett. We were only about 10 minutes from home and it was just a quick appointment, but once again I am reminded that Epilepsy does not have rules. When we left the house he looked great, no clue that a seizure was coming until it was happening.

I certainly didn’t expect him to be in status in a matter of minutes like he was. I went ahead and placed the Seizure Alert Dog Medication Inside bag that will be clipped to Blue’s vest in my purse with preloaded Nasal Versed and Diastat and will not be leaving home with Brett without it again. Brett will be getting the bath chair and his wheelchair now has a seat belt. We were referred to an Easter

Seals program to try to locate a better wheelchair after the physical therapist saw him actually have a seizure in the chair it became evident that he needs a chair that we can recline the back in the even of a seizure for his safety. If we can’t locate a used one he will order him a new one. All the children are excited about Hanukkah coming! Hope to update soon, if not I will I will update after the Geneticist appointment. We should have some photos in January of the boys and Blue! She is coming for a practice training visit with Brynn and Brett! Of course we are all really excited about this! Blue’s balance is likely sitting around the $900 mark! We are getting so close to getting her paid! God is good, even in the midst of this Epilepsy battle, God is so good and has never left our sides!  I have taken on new responsibility at National Seizure Disorders Foundation as the Treasurer and started writing Caregivers Corner as well.  http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner/  
It has been a blessing to be a part of NSDF and I expect really great things to come in the future.   

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Emotional mess turns into Thankfulness!

I sat down to write this blog today with so much emotion. Joy, Thankfulness, Gratefulness,

Love, Happiness… with a little Pain and Raw Emotions from the past. This past week has brought some of the most wonderful awesome news… In a matter of hours I got word that Brynn will not have to have surgery for his knee! The Orthopedic surgeon said that his kneecap could and likely will pop out of place again some time in his and need surgery, but if Brynn were his child with all that he has going on, he would leave it alone and hope for the best! Wonderful news, I was really dreading the thought of Brynn who is at the moment more stable than he has been in years with his seizures having surgery! Not long after that news came National Seizures Disorders Foundations email with the balance we need to finish Blue’s training…

 Just under $1,600! Amazing that so many have donated and made the impossible possible! What a tremendous blessing to know that so many people have come together and helped make this happen! It should be fairly easy to raise the balance needed and that takes a lot of stress away from our daily

unknowns. We know that Blue will make such a difference in the quality of life for Brynn and Brett. We can’t wait to get her home and feel all the love she is filled with from all of the love, prayers and support that is making her possible. We will always see each of you as a part of Blue, she will always be an amazing beautiful testimony of how God made the impossible possible. We checked

the P.O. Box today and found a bunch of amazing Birthday wishes for Brynn and Brett. The cards show them they are thought of and loves by so many people from all over the place! They were amazed that they each got a card from Canada too! The cards will be a beautiful addition to their wall of Love, Prayers and

support! There was a key in the P.O. Box leading to another box. Which had a Big box from a loving person filled with Paint, Brushes, Paper, Pencils, Cards and even stickers for Abigail! They were so surprised to see that box and were anxious to open it too!
They will be painting for a long time with the two beautiful boxes of love they received from two “Strangers” that have become “Family.” 

Here are a few samples of Brynn and Brett’s work! They both enjoy looking at other paintings and really enjoy painting too! 



With all that amazing, happy, joyful, grateful and thankful emotion it made me see the coming Birthday of Mom and the Anniversary of her murder differently. Every year about this time before her October 19th Birthday I have this overwhelming sadness and tears flow so easy. I noticed it a few days ago… and as usual pretended to ignore it’s looming dark, negative, sad effect on my life. For years, it has become a part of me that I had no control of. I tried year after year to portray to anyone who would listen how wonderful, beautiful she was and how unfair it was that she was taken away so brutally, and so suddenly. It occurred to me today as I was watching the joy on Brynn and Brett’s faces from

their P.O. Box filled with love… that I can no more convey who Janice Estelle Ashcraft was as I could convey how much it means to Brynn and Brett that they are so loved and thought of. I can post 1,000 photos but they could never convey who she was or how she lived. I could write a million words, but I can never convey the effect her murder has had on her mother, her siblings, her children and even the next generation the effect will go on.

“Cast your burden on the LORD, and he will sustain you; he will never permit the righteous to be moved.” ~Psalm 55:22
 

I can choose however, to try to stay positive. I have chosen to forgive the person that I hold responsible for her death and I will chose to focus on the positive… no matter what life brings my way.

“For the people shall dwell in Zion at Jerusalem: thou shalt weep no more: he will be very gracious unto thee at the voice of thy cry; when he shall hear it, he will answer thee.” ~Isaiah 30:19   I will choose to be sure that my children have all the love that they have missed out by having a broken family, by reaching out and letting the strangers that love, support and pray for them know that they need them. “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,  as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” ~2 Corinthians 4:16-18
 

They will never get a gift from their Grandmother… or many other relatives who are not in their lives. They are however blessed by God to have the adopted Aunt’s and Uncles, Gan Gans and all the wonderful loving people who have stepped up in her place and for that I am forever thankful.

“The LORD is a stronghold for the oppressed, a stronghold in times of trouble. And those who know your name put their trust in you, for you, O LORD, have not forsaken those who seek you.” ~Psalm 9:9
New Video for Blue!https://youtube.googleapis.com/v/6hk0LlEFv5s&source=uds

Brett’s current common Seizure Type… 

Just because Brett is so darn cute! 🙂

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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… 


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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!

https://youtube.googleapis.com/v/gat6NPfkuBY&source=uds

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.

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Guardian of the Night K9: 4 new puppies will be delivered to GOTNK9 on Aug. …

Our Service Dog Trainer started a blog! Now we can all follow along with Blue’s training and growing! How awesome!! ~Denise

Guardian of the Night K9: 4 new puppies will be delivered to GOTNK9 on Aug. …: 4 new puppies will be delivered to GOTNK9 on Aug. 1st and begin their training. SDiT Athena will be a PTSD dog for a solider, SDiT Camo will…

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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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Brett’s Surgery complete and other ramblings!

Brett finally had his VNS implant surgery on 5/12. The original surgery was postponed due to both Brynn and Brett being infected with Mycoplasma (Walking Pneumonia), which aggravated his asthma. So 6 weeks was needed before he could be put to sleep for his

lungs to heal. Surgery went well, other than his heart rate dropping when it was tested, no problems. It was tested twice after the wire was moved and assumed it was the wire position so it got to stay! His VNS, like Brynn’s was left on at lowest setting when they closed and he will return to get checked by neurosurgeon next week,

as well as both boys get to visit with their most favorite Neuro Dr. D. Today is Day 8 and his incisions look great! He did have some possible pus at the chest incision, as well as an ear infection last week, so he has been on antibiotics since Thursday. We are anxious, of course, to see how this will help his seizures.

 At present, Brett is having clusters a few times a

week, with days in between with some night time seizures now and again or none at all. This is an improvement from the everyday seizures we saw over the past few months. We are learning to be thankful for every little thing!

“Prayer is not overcoming God’s reluctance, but laying hold of His willingness.” ~Martin Luther

 Brynn, however, is holding strong with the greatest seizure freedom he has ever had. Only having small seizures most nights and daytime he is having only really small “lost moments” not obvious bigger complex partials like before. VNS? Onfi? Med combo?  All of the above?
Who knows,

but we are very happy with his current condition!  He is having improvements in his general cognition, and we will likely talk about weaning one of his medications this neuro visit. Pretty exciting stuff! 

  We have a lot of changes
coming over the next few
weeks, many new experiences… The possibilities are endless! We are all excited!! 🙂 More on that later! ~Denise


“So we are always of good courage. We know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight.” ~2 Corinthians 5:6-7


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Circles of Reality….

Ever feel like your going in circles? I mean really going in circles, in life. When something happens it doesn’t seem new, just a repeat of the same circle. I find myself feeling this way a lot now, especially with the boys. So much of what they are going through is the same, watching Brett is just like watching Brynn all over again. I have a tendency to obsess over things. (Pretty sure you may have already figured that out with my past ramblings.) I suspect it roots from Mommas murder. It’s hard not to think that had I asked the right questions or researched it better, maybe the truth would have been known. 
There comes a time when you have to just accept things as they come to preserve your sanity. That’s where I am with this monster called Epilepsy. It has stolen so much from Brynn and to see Brett affected by it is just heartbreaking. The reality is that I can do nothing to change it, I can do nothing to fix it and I have done everything I can do. I pray every day for a cure  and the
seizures to stop, have spent days, weeks and months researching and trying to figure it out. I have tried a few diets, omissions in diet and even several herbal and even homeopathic remedies with no success. The answer is obviously not a simple one and maybe I am just not meant to have it today. I have accepted that, although that will not stop me from looking or praying it will!  
Brett’s VNS surgery was scheduled for April 4th. We spent Epilepsy Awareness Day (March 26, 2014) at the Zoo, celebrating Purple Day and having a fun family day before Brett’s surgery. It was a lovely day! We handed out lots of Purple Bags with Cards, pictures, Purple Epilepsy Warrior Boys Bracelets and had so much fun! Met some realy nice people and got to talk about Epilepsy with some really nice people. I hope we can go to a bigger “Real” event next year!      

I took Brynn to the ER on Sunday, with seizure clustering, fever, congestion and he had become lethargic. He was given the diagnosis of Mycoplasma infection. This is the third time Brynn has had Walking Pneumonia. I kept them separated as much as possible, used Lysol like crazy… but it wasn’t enough. On Tuesday, Brett was at the Dr. and given the diagnosis of Acute Bronchitis, likely the start of Mycoplasma Infection. He was given a Steroid and an Antibiotic Shot to try to ward it off as well as scripts for  Oral Antibiotics and Steroids. Thursday morning it became apparent that he was not going for surgery on Friday. Now that it was established that he had Mycoplasma, surgery could not be scheduled for 6 weeks. So Brett’s surgery has been rescheduled for mid May.

The whole house ended up with Mycoplasma, and that stuff was brutal for Brynn and Brett. Pretty mild for everyone else, except Abigail’s ear infections. Brynn’s seizures were irritated by being sick. He was given oral antibiotics, as he cannot take steroids due to psychosis reaction to them. He is returning back to normal baseline now, and for that we are thankful.
Brett is also doing pretty good now, his asthma reared it’s ugly head but seizures have returned back to his baseline already. I will keep my eyes on the road, keep my heart on the goal and keep moving forward!                                                             

We were working today on adding and subtracting fractions. It was wonderful to see that “Aha Moment” in Brynn, when he beamed as he said 1/2 + 1/2 = a whole!  It has been a while since I got to see such a big Aha Moment in him, very refreshing after such a bad few weeks! I have been doing the Sequential Spelling with them both again. Brett has no problem in Spelling except those “little sparks” that make him write the word wrong when he knows how to spell it. Reading

is an issue as his eyes will not work the way they need to, likely a result of the Convergence Insufficiency and his Occipital Lobe Epilepsy strong focus fighting to keep him from being able to see correctly. Math seems to cause Brett to struggle most, especially once he looses focus or gets frustrated. Comprehension is good when I read to them both. Brynn is still struggling in Reading, even at an early second grade level.

I suspect that his Convergence Insufficiency may be the root cause complicating his lower IQ and Cognitive Disorder NOS. He knows some bigger words by sight from memory, but really doesn’t seem to have the memory and processing capabilities for much higher “Fluent”  reading. He does perform well at the 3rd Grade Math level, verbally and working in group, as long as we stay in the same area long enough and revisit often. I think we will stay on factions for some time now… with some multiplication mixed in! It is working well to do Brynn and Brett’s home School together. As for the circles I seem to be going in, I have accepted that at least for now this is just how it will be. I can make changes to better the experience. If I am going to go in circles, I want them to be filled with as much love, peace and joy as possible! Here’s to more of those things for our 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