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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We are making progress, progress is good!





It’s been a while, here I am again catching up! We are pretty excited that the Neurology Clinic we are going to sent us to a Geneticist! He will be researching the two genes that Brett’s Epilepsy Panel came back with. He also ordered a Fragile X and CGH+SNP Microarrays. He doesn’t think they have Fragile X, but he felt that we should do it just to cover that. The Microarray test may or may not give answers, but it will answer some questions.
The geneticist also feels that whatever we are dealing with is a female carried problem, and all my male children had a 50/50 chance of having it. I suppose only time will tell and it appears that we will wait several weeks to 6 months to get the full test results. YIKES! What is the test? Well, it test for chromosomal imbalances that may be the cause of developmental delay/disability on the boys by looking for any imbalance of genetic material such as additional copies or loss of whole chromosomes or deletions and/or  duplication in segments of chromosomes. The information we gain may have no clinical value as for treatment protocol, but it is possible it could. If nothing comes back the test will act as a baseline, and we will know what it is not. It will be good to have it done even if we get no answers, so at least we can say well it’s not _____. I have taken the test with a grain of salt, as I have seen so many parents hope that it would give answers and they were disappointed. I have also seen a few that did get answers from the test, so I still have hope for answers!  It would be a great benefit to have a name for this journey other than Cryptogenic Refractory Epilepsy. Even greater a benefit if we could know for future generations how likely it is that this will be passed on. Brett is still having a hard time,  

since the hospital admission he has not had cluster or big seizure freedom for more than a few days at a time. He seems to consistently do better after it gets dark until bedtime over the last several weeks. We have the Nasal Versed, Diastat and Ativan to use when they get out of hand. Fortunately, I find that the Ativan given soon enough can help him to not need the others. He is handling it well, and I know he is working at understanding his seizure disorder.  

He knows when his body needs rest and does not have to be told to sleep, he just lays down and sleeps when the “seizurish” feeling hits him. This is a wonderful accomplishment because resting is the first defence against clusters for him it seems. We purchased an awesome Purple Wheelchair for him from a kind seller on ebay. He let me trade a CARE bracelet I had for sale for the wheelchair and I paid the shipping. It is an Invacare Solara Tilt in Space model. It’s a bit big for





Brett and we have no way at the moment of transporting it. The idea came about when Brett went into status at the physical therapy office and having the Tonic Clonic seizure in the standard chair we saw how dangerous that was. What we need is a chair that can be adjusted when seizures happen to lean him back and keep him safe. CRS referred us to Easter Seals, who is working with us for a solution. We will need a Hitch for the family vehicle, but the amazing sweet lady at Easter Seals decided that he really needs a smaller chair, with wheels that he can move himself when he is able. They possibly even have a lift available for us to use to attach to the back so that we can still access the hatchback. Blue will be home soon and we will  not have a lot of extra space in the family vehicle. We expect to have it for at least a few more years, so we have to adapt it to make it user-friendly as our needs change. We are looking forward to getting out the house and truly obtaining “Positive Seizure Management” when Blue gets HOME!  It sure will be wonderful to finally be able to do things in spite of the seizures. As a family, we need to learn to live life to the best of our ability, through the seizures! I find myself in a great amount of gratitude for those that have donated to make Blue possible. Her balance is down to $410 as of today. It is amazing that a few people, churches, and one business came together and got us this far. We all have great happy feelings knowing that people have seen the need, reached out and gave.

Here is a link to the Red Basket site set up for Brynn and Brett’s Seizure Alert K9 Blue:


https://redbasket.org/320/bring-blue-home
All donations through Red Basket are tax deductible. We would like to thank Red Basket for their help in setting up the boys page. They are really great to work with and verify all askers, so you can feel good about donating to any cause on the site. 

I have been volunteering with National Seizure Disorders Foundation and hope to spend many years helping others achieve their goals! I really enjoy being the Treasurer and writing Caregivers Corner! We have some really great folks on the Board of Directors and I am blessed to have them in our lives. We would like to thank National Seizure Disorders Foundation for helping us to believe that Blue was possible and helping me not to loose faith or focus when people were not donating! 



Here is a link to the latest edition of Caregivers Corner:
http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-by-denise-marsh-2/


   

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.   

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.   


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Abba Father is always faithful…

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

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

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


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


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

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

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


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

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

Brynn, Brett & Abigail ~May 2010~

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

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

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

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


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

Brynn, Brett & Abigail ~January 2014~

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


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

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

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

Fast Forward Realities…

It is with a heavy heart that I sit to write this blog update.  A lot has happened since my last post so I will try to catch up with pictures as I give the most recent update on Brett.

                                               

We had a wonderful Hanukkah! Abigail really enjoyed it this year and even helped light the candles. The Boys both enjoyed the Epilepsy Awareness in Disneyland bears and T-shirts that I got them! They both love their new cool beanie helmets I got them!  Last year at this time I was seeing cognitive decline in Brett, behaviors similar to Brynnon’s in Brett. I saw an increase in what I could only describe as extreme emotional outburst for no known reason and he

couldn’t explain it either. He would say things like he couldn’t see the words while Reading or he didn’t know how to borrow or carry in Math. A bright boy since birth, Brett was struggling to work at grade level when a year prior he was a year ahead. I tried to see it for what it wasn’t as long as I could. I had been catching events that looked like seizures in Brett for a few years while recording Brynn.

After being told by the Pediatrician he was faking seizures and peeing himself for attention, it eventually became easier to believe her, than to even think it really was seizures. One night while watching a movie Brett fell asleep. He got up and was completely blank looking. He stood and was making hand motions like he was touching something. I watched, tried to talk to him with no response and thought, well whatever that is it’s not normal. I researched… and I finally came to the conclusion it could be seizures and that Dr. was wrong or it could be Parasomnias. Ah, yeah

Parasomnias make more sense and the cognitive decline likely just the effects of having so much go on in his sleep. I took him to a local Family Physician showed her a few videos and said I am not saying these are seizures, but they are similar to what Brynn does, maybe they are Parasomnias. She agreed and thankfully Brett was referred to Children’s. We went for the first visit and I think I may have been the only person who saw the video there that was convinced that it was Parasomnias. He had a sleep deprived video EEG and was diagnosed with Epilepsy in September. He started Keppra, which caused horrible rage and anger. 

We switched to Trileptal and over time it did seem to help his daytime become a little better. I did not see much change in his nighttime. We went to his first visit with Brynn’s neuro Oct. 1st, and at that visit he said he would not wait until he is maxed out on five drugs to consider Epilepsy Surgery and that he was concerned about genetics.

All of a sudden, just when I got comfortable a few weeks later, he became very verbal about what was happening to him visually. All those crazy symptoms he had complained about blurred vision, altered perception of what he was seeing, altered sizes of things, his vision moving…

The more questions I asked, the clearer the picture became. I reported these things to the Neuro. It was decided that he needed another medication added, so we added Topamax. The dose was to be 25 mg AM & 100 mg PM to avoid any further problems in his schooling. It was great at first, he slept soundly and peacefully more nights.                                                                                                         

His daytime seemed much better… but over the next few weeks my life became a whirlwind. Brett started having bigger daytime events that terrorized him and everyone who saw it. I did not know if he was loosing contact with reality or having symptoms of a terrible mental disorder… 
but he started having something happen after the Complex Partials that I did not know could happen.

TERROR, Irrational Fear, Screaming, Wandering and if being restrained or stopped RUNNING. We started recording the events on the third day. Something was happening that never happened before. I called the Neuro to report these events after I researched and figured out that the fear could be part of the Complex Partials. I suggested that perhaps the daytime dose being so much lower wasn’t protecting him well enough in the daytime, because now his nighttime events had disappeared. The neuro agreed and we doubled the daytime dose. After a few days it was evident it was helping some. I called again and was told to go ahead and get the doses even. It spaced out the events for several days.

Then as if nothing had changed it went back to every day. I decided the best action I could take was to request the neuro watch the videos. After he viewed them, it was decided that we needed to take action and have him go in for an extended EEG to see if he could be a possible brain surgery candidate. We returned home yesterday from Brett’s first Children’s Hospital admission. Brett had a seizure while being hooked up to the EEG leads, which made me think that may be a wasted visit. I did have the nurse that helped keep him on the table as well as the EEG Tech witness what happened, but I knew without it being on EEG it wasn’t enough.

That first day while hooked up he had a few auras that I didn’t push the button for. That night he was a teeny bit restless but not anything to push the button for. The next morning he got his breakfast tray and was not excited about that bagel he asked for once he saw it. He picked at the bagel and the rest of his tray. A bit later he asked when is lunch… at 10:30 lunch is a bit far away for a growing boy, so I offered to go buy him one of those Red Baron personal pizzas out the machine downstairs. After asking him if he was sure he didnt have the vision thing or feel like he was going to have a seizure, I asked his nurse if she could

keep an eye on him and she agreed. I waited for a while for the elevator, and eventually made it down. I anxiously looked for it… the shiny package that he wanted… Cheesy goodness, there it was! The machine wouldn’t take my debit card so I scrounged up a few bucks from my wallet. I grabbed a Green Tea for myself and was out of there… a guy called Ma’am your change! I grabbed that and again was on my way. Made it back up… and found the Nurse next to Brett in an obvious seizure… tears in running down his face… I spoke to him and he had that fearful look…

My little boy was lost,  completely lost. Didn’t know where he was or even who I was. I told the nurse he is having a seizure, pushed the button… Dr. M came in soon after and asked if that was a typical seizure. I didn’t see onset, but knew by the last part I saw it likely was, other than he didn’t try to get out the bed or take the wires off. So she said she would look it over and if it was enough, we may be able to leave.It seemed like forever before she came back. When she did she said you never want a neurologist to say your child is fascinating, but his seizures are very fascinating. He appears to be a good brain surgery candidate based on that seizure and it was such a good example she

will be using it in the future. She totally got how it was diagnosed as “Night Terrors” and how it was confusing to me that it could be a seizure, because his awareness comes and goes. It’s an unusual etiology and the progression of the seizure was very unusual. With the amount of Auras he was having she suggested that we stay the extra night and try to capture more.

I was done, and felt like I needed to go home. So I opted to do just that. So… all those crazy visual symptoms are Simple Partial seizures confirmed by EEG, as well as the Complex Partial seizures confirmed. She confirmed as well that a seizure he had a few days prior with jerking in both legs that eventually became whole body jerking was indeed a Tonic Clonic. He had the Right side only jerking every now and again at night and eventually during the day. When the seizure focus goes off it in the Occipital Lobe it moves to the Left Visual Assoc. Cortex causing the crazy Visual symptoms. At that point it is considered a Simple Partial seizure. It it keeps going and shoots through his Temporal Lobe causing the fear, euphoria and

more obvious Complex Partial it is considered an Aura. An Aura is a sign that a bigger seizure in coming experienced by much of the people with Temporal Lobe seizures. When his right side starts jerking it has spread through to the Motor strip and that time it was both sides jerking it had generalized (spread to the other side of the brain) into a Tonic Clonic. It is a good thing to have answers and know that there are options. I still have a lot of questions before Brett will be having Brain Surgery. The main question is Genetics. I cannot

think that it is “bad luck” as she put it. It’s too much like Brynnon. Both boys have the same genetic makeup, you can see it by looking at them, by the seizure type and progression and by so many other signs.  I think it would be very traumatic to have Brett go through Brain Surgery, and it is a step I am not willing to even consider without genetic testing. Brynn only had one Focal area at one time, now he has three. So in my mind, why would you go through that kind of trauma and hope for seizure freedom if eventually it will return and what if it is worse?

I don’t think I have the courage to even explore the surgical option without knowing a whole lot more. Whatever happens, I know without a doubt that our Abba Father is in control. No matter how it looks or feels, I have full confidence that Abba Father has Brynn and Brett in his hands and they are perfectly made.

The beanie Helmets I got the boys are from:
http://crasche.com/

The Cute bear Brett has with him at the hospital was a gift from CeCe Cares:
https://www.cececares.org/

The wonderful totes, bears and awesome T-Shirts came from:
http://www.epilepsyawarenessday.org/

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