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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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.

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






Comfort through the why…

                                                          

2 Corinthians 1:3-7 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,  who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.  And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

At times in this Epilepsy journey, I find myself questioning WHY? Why do my boys have to suffer like this. It doesn’t seem fair that they have seizures, that they struggle to hold memories, that they struggle to learn. It doesn’t seem fair that we have to face every day, not knowing what the day will hold, not knowing at any moment when another seizure will hit. It doesn’t seem fair at all, I know it must not seem fair to them. As with most things in my life I struggle with, I think about what I would tell someone who came to me with the same struggle. The answer is simple… The Father is not going to give us all the same struggle, but every human being will struggle with something. I never imagined that we would be in this struggle. Life was so wonderful looking back, but I remember struggle then too. Of course looking back, I have to giggle at myself at the little stuff that I thought was so awful, so heavy, so overwhelming at the time. At the time it seemed like the worst, now it seems like it was no big deal. It’s about perspective. We hold the ability as humans to keep a positive or negative perspective. It’s difficult at times to keep a positive perspective, especially when you feel overwhelmed. The more you focus on the negative the bigger it seems and the greater difficulty you face in finding positive again. I am reminding myself daily, that the Father is still in control… and no matter how it looks or feels He has a plan. I look at Brynn and Brett, amazed at their strength and perseverance.

Surely, the Father has a wonderful plan for their lives. How many people will they be able to help years from now, who are struggling with seizures. They are true Warriors, Fighting Epilepsy one day and one seizure at a time. What a wonderful testimony they will have, to stand firm one day and tell their stories.
Brett received a lovely Hernando Bear to comfort him during his VNS implant surgery and healing. It was sponsored by: Angels 4 Epilepsy, TG Bears and donations by group members. He will be going in less than two weeks to meet with the neurosurgeon about his VNS implant surgery. Brynn had his implanted on Oct. 25, 2012, we believe it has helped reduce the number of seizures that generalize and perhaps even reduce his postictal lengths as well. We feel it is a good option for Brett too and should be at least somewhat beneficial. Brynn has recently had either a return  of daytime seizures or an awakening to realize they are happening, no way to know really. It’s new for him to “know and express” that he has had a seizure. He has remained somewhat stable over the past several months. Staying at the baseline of

2-4 seizures a week. Brett is still on a roller coaster, having one, two or clusters of 6 or more almost daily. Both boys now have the diagnosis of Refractory Cryptogenic Focal Epilepsy. (Meaning they have a cause that is unidentified, are resistant to medical treatment and have focus areas where the seizures start)The Courtagen Epilepsy Panel revealed no answers as to the cause of Brett and we assume Brynn’s Epilepsy cause. We obtained and are now using seizure journals from the National Seizure Disorders Foundation (the Foundation that is sponsoring Brynn & Brett’s Seizure Service Dogs fund raising). They are beautiful and make seizure journaling so much easier than our printed pages, which were hard to keep together! They can be found here, if anyone is interested:
http://nationalseizuredisordersfoundation.org/my-seizure-journal-2014/

….Back to the scripture I started with. I think people may assume that when it says comfort, that it means rescue. The Father comforts us by encouraging, strengthening you and giving you hope. When you come out on the other side you will be able to comfort others.  I hope that you will be comforted, in whatever struggle you are going through. I hope that through Brynn and Brett’s Epilepsy Journey, we will always find a way to see the good and focus on the positive. I HOPE for the day that we can comfort others in the same path, having overcame the struggle, the pain and the uncertainty of Epilepsy. We must remain steadfast in faith, that one day, videos like this one will no longer be recorded our home.   


.

Endurance

Waiting… I never really enjoyed waiting. I admit, I use to be better at it too. I remember people use to say “Denise, you have the patience of a saint.” Just words, but I must have been given a great gift of patience. I have to work harder now at Patience, because I feel I lack something, Endurance…  I get anxious now waiting. I feel like I do not have the strength to wait things out.

When you have a child with refractory epilepsy, so much waiting is required. No matter how much patience you think you have, watching your child have a seizure will make you feel like you do not have the endurance to go on…
You start this medicine with so much hope that it will make the seizures stop. It does, for a while and another is added when things get out of control…               On and on this process goes…

 Finally one day the Dr. says, this may be the best we get. We did the VNS surgery for this reason. The medications tend to help Brynn honeymoon for a time, but once again his body just gets use to it or learns how to seize despite the medication. So, we did the surgery with the hope that he would do better than the one third chance of a 50% reduction in seizures…. and we wait… and wait… Did you know that in training for endurance, you could end up with a negative impact on strength if you do not also practice resistance training. Waiting in faith is like training and without prayer we too would end up weak. The boys and I pray every night for Brynn and all the children and adults we know that have seizures to not have seizures anymore. We praise Abba Father that one of them has stopped having seizures and a few others improved! This has encouraged our faith once again and helped me to become stronger… and continue to endure! We weaned one medication and started a new medicine… and waited some more.  And…. Once again, we have a honeymoon! Yes, Brynn is back to baseline and better with the Onfi! He is not having Tonic Clonic the moment and the Tonics and Complex Partials are so much less traumatic! This honeymoon started out great, fizzed out and then came back full force it seems! We are so excited and enjoying this time! We started fund raising to get Brynn a SAMi Seizure Alert Monitor Camera System. Brynn and Brett always being find of Survival Bracelets wanted to make them. So we bought the 550 Parachute cord in fun colors and got to learning! Brynn and Brett like to try, but they haven’t mastered the art of making

them… So at present I have made oh about 70 of them!  Saving and Hope to buy him a Recumbent bike soon too! After he had the seizure while riding the bicycle he has been heartbroken that the neuro said no more bike riding. He has only been able to ride his 4-wheeler once so far. The recumbent bike sits low to the ground, has three wheels and in the event he has a seizure while riding at least he will be close to the ground and not fall over… We even had a Lemonade Stand for the first time last Sunday! The boys had so much fun and raised $20 for the SAMi fund!!

So here we are again, waiting… and being patient… Knowing ever still that Abba Father is in complete control… It will be as it will be, in HIS time and only then… Not the easy fun we had hoped for, but you know… at least we are having some fun along the way!!
Ah, indeed…
The longer you wait the better it is!!

Don’t Ever Doubt It,
Abba Father Knows ALL!!