Author: prayeroffaith

prayeroffaith

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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prayeroffaith

In His hands…

the mental capacity or faculty of retaining and reviving facts, events, impressions, etc., or of recalling or recognizing previous experiences (dictionary.reference.com)                 
For in this hope we were saved.
   Now hope that is seen is not hope.
       For who hopes for what he sees?
            But if we hope for what we do not see,
                    we wait for it with patience. –Romans 8:24-25 
    I find myself reliving the old memories, I would much rather forget. Watching Brett’s Epilepsy get out of control, the medications not stopping the seizures, watching him struggle to do what he would have said was “baby work” two years ago and the fear of what could happen is at times more than I think I can bare.

Yesterday, Brett had a bad. He was eating lunch and his head dropped hitting the counter. Eyes rolled back, drooling, unresponsive for what seemed like an eternity. After a few moments he raised his head looked straight into my eyes until the rolled up and to the right. Both arms started jerking… His eyes came down as he babbled nonsense words lost… completely lost in a seizure…..   
Of course it is not me who should carry this burden, at times it is difficult to put all of this in the Fathers hands and leave it there. It’s more than I can handle and there is nothing I can do to fix it. All I can really do is surrender it to the Father and trust Him and Him alone.
Two more Complex Partial seizures followed, rescue medication given…
I thought he seemed okay three hours later and traveled to town to pick up a few things. In the parking lot a Tonic Clonic occurred… Made it home with my now wobbly and confused boy… only to see him endure 5 more seizures…

Aftermath… I sit here sometimes and I get so frustrated. Hearing Brynn stomp loudly enjoying the pleasure of making noise, tap with and on just about everything, yelp & bark... I sit frustrated and then I think back, realizing what a battle he has been through. Realizing how blessed we are they he is doing so well. Realizing just how special he really is. It’s hard sometimes to look at this BIG 14 year old boy and accept him where he is. To accept that to him it is perfectly acceptable to get such pleasure from such noise making adventures. I am his Momma and I have to remind myself at times that he may be 150+ pounds and although he has hair on his upper lip, his brain has not caught up with his body. I do worry will someone be able to see him as the beautiful blessing he is, a child at heart when I am gone. I watched him gain and loose so many things over his lifetime. I watched as parts of him slipped away and never returned. I watched his struggle and I fought to keep him, every part of him here with us. I struggle not knowing with every seizure what memories may be lost or what parts of my sweet Brett may return.     


Rejoice in hope,
      be patient in tribulation,
             be constant in prayer.
                            -Romans 12:12 



I find myself in struggle between Brett’s now and Brynn’s past. I struggle because we have been here before. We have seen what can happen. What we are seeing Brett struggle with Epilepsy worse than Brynnon was at this point. Brett was a year ahead in his home schooling, over the last two years he has regressed to struggling to work at grade level. At this moment he is likely almost a year behind in some areas. Brett’s loss of ability is more profound as Brynn was never ahead on anything or even on level. Same age, 9… Same seizure types… Same behavior… It was horrible enough to see it once. My heart breaks even thinking that I am watching it all over again and knowing that there is nothing I can do to stop it. I thought I knew what it felt like to watch a train screaming by at 100 miles an hour toward a broken bridge. That is exactly what this feels like. One thing that comes from struggle, from pain, from any battle is FAITH. 

Reminding myself tonight that my strength doesn’t come from within myself, it comes through my faith the the Father. My Hope that everything is going to be okay… in HIS time. All those years I spent wondering around in the dessert, I had no idea I was being trained for battle. Just when I thought I may be home free, all relaxed and ready to settle into the promises… I came across this wall called ePiLePsY. It’s huge, it can be deadly, doctors don‘t know how to take it down, no one knows why it is there, when it was put there

… but we DO know that the Father knows. Not only does He know, but He has the master plan for these precious Epilepsy Warrior Boys He has blessed us with. Now some people think faith is looking at a situation and expecting the Father to move fast and fix it. No, faith is putting the situation in His hands and trusting HIM to do with it as He wills. That is exactly what we intend to do…
!HAVE FAITH! !SURRENDER! !TRUST HIM! !BELIEVE! !NEVER LOOSE HOPE!


     
prayeroffaith

Fund Raising Flier

Both brothers have numerous life altering seizures. Brett recently went through a day of experiencing 14 seizures and Brynn, regardless of medications and a VNS implant, still experiences unpredictable seizures. 


About The Family
“We’re doing all we are able and we are on the right track. A seizure service & alert dog for the boys will give them a sense of safety and increased confidence while giving me much needed Peace and stress relief.” says mom Denise.
They are winning because they have a strong support circle surrounding them. Their mother, Denise is a strong prayer warrior believing in healing and standing in Faith. Their dad, Brian is hard working. The Brothers also have four other siblings. The family has the National Seizure Disorders Foundation, our resources and support at a moment’s notice.
Consider the life these brothers lead.  Their seizures, although diagnosed, are uncontrolled and unpredictable. This leaves the whole host at unrest. The family needs peace, mom needs rest, and the boys need healing.

What You Can Do
National Seizure Disorders believes to achieve positive seizure management, the only true and positive journey to healing with seizure disorders, one must believe and practice Hope, Faith, and Love.  Among these, Love is the emotion that heals.  Brynnon and Brett need the Love of those around them, those that know them, and strangers right now.  Everyone reading this has the opportunity to Love these brothers through positive thoughts, prayers, donation, and sharing this story with others.  National Seizure Disorders Foundation has made it easy to donate.


We are Fund Raising to get the boys a Seizure Service Dog!! Brynn and Brett are sponsored by: 

The National Seizure Disorders Foundation  http://nsdf.us

Please Find, Like and Share: http://Facebook.com/EpilepsyWarriorBoys


prayeroffaith

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… 

¸…¸•*´¯`*•.¸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´¯`*•.¸¸…¸

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…

´¯`*•.¸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…

¸…¸•*´¯`*•.¸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/

..

¸…¸•*´¯`*•.¸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´¯`*•.¸¸…¸
prayeroffaith

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 didn‘t 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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prayeroffaith

Feeling Lost in Familiar Territory…


As a parent in my younger years, I would worry about such different things. Even without considering Epilepsy, life was different then. I remember my oldest child being so clean. Never letting her experience getting dirty, playing in the mud or even splash in a puddle. There is clear photo evidence that with my second oldest child, I relaxed as a parent and he did get dirty. I am pretty sure that my third child was the first to actually play in the mud and when they all played blissfully, sitting joyfully in a big mud puddle waist deep… I learned that it does indeed come off. By the time Brynn, our fourth child was born just about anything was game. It was like I had a different kind of child. He would spend hours playing in the dirt with his trucks. He was all over the place… so much energy… so much determination… He would literally fall asleep standing up and wake up running. When Brett came along I clearly remember thinking that he too was in Bryan’s league. He had that same hyper, curious look in those same big blue eyes from early on. 
Ah, those blissful days of not knowing what was going on… 

It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. 
(Deuteronomy 31:8)

I watch and listen in the quiet of the night… 
A jerking hand, a leg twitching… a gasp, snort, giggle, a moan or grunt… 
Things I would have never heard 3 years ago take on a whole new meaning. Listening and watching… hand raises, eyes open, pupils dilate… Will he pick at the blanket? Will he chew a hole in his inner cheek or will it be his toungue? Will it stop or will it go on? I feel like I am reliving a nightmare. It is so much worse when you already know what can happen. I don’t want to watch, I just want it to go away. I don’t want to see his sparkle taken away. I am out of my comfort zone. 
Feeling lost in a place I have never been before, yet it feels familiar…

The Lord is a refuge for the oppressed, 
a stronghold in times of trouble. (Psalm 9:9-10)

Just like in my early days of Motherhood when I thought I knew it all… Here I am once again, questioning all I know and learning more about Epilepsy and seizures than I thought possible. I found out after the first two children that playing in dirt was actually good for them. Who knew that getting dirty actually was healthy for children? I found out with Brett’s diagnosis that a simple Partial seizure can be just as frightening as a Complex Partial. I found out too that I don’t know as much as I thought I did about Seizures. For the first time in a long time, I find myself questioning what I have missed in Brynn. Brett is teaching me so much about seizures that do not have stiffening, shaking or postering involved. Visual disturbances, floating and odd feelings seem to be a big part of his days.

Who knew a child could feel this way and they actually think it’s normal? I would like to go back someday to those giddy days of parenthood when my heart didn’t skip a beat every time I  heard an odd sound through the monitor. I honestly don’t remember what it’s like not waiting for the big one… To softly, gently drift off to sleep without a worry, besides how to remove the dirt from that new Elmo shirt. Epilepsy has stolen a lot from our family. It has stolen parts of Brynn that we can’t get back. It has stolen time, laughter, peace… I can only pray that whatever this is can be stopped in Brett. My heart hurts looking at his sparkle flickering… It hurts to even think that seizures could at any moment take his sparkle away… It’s like watching a train move slow motion straight for a mountain… when you can’t see the opening. I cry out to the Father, please let that opening be there, please don’t let this do to Brett what it did to Brynn. Daily, I struggle to keep it positive, no matter what… I did find out how to remove the mud from that new Elmo shirt. Just a long soak in the sink and it was gone. Much like that mud stain, it will take time to let Brett’s diagnosis sink in and become clear. Likely, Much time will pass before we have full answers and prayerfully one day we will all be able to not worry about seizures… I have never had a sense of direction. When I get lost I have no way of determining where I am or how to get where I need to be. Recently, this led to me being lost for an hour in one smaller part os a larger city, thinking I was somewhere else. In this situation, the worst thing you can do is keep driving. Without assistance from anyone, you make it worse by getting further disoriented and likely driving away from the solution. Looking at the map when I got home, it was easy to see what I had done. Such is our Epilepsy journey. With a great Doctor, Brynn’s history and Brett’s diagnosis we will have to work together to try to get this figured out and be where we need to be. I don’t just want to know the genetic side of things, now I “need” to know. Most of all I will be depending on God to keep us sane in the process. It’s a scary place to be… but with God’s strength, mercy, grace and peace we can too get through this.    

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)


November is Epilepsy Awareness Month.
If you would like to send Brynn and Brett a card or a letter, email me at:
 PrayerOfFaith4u @ gmail . com (no spaces) 
with “Epilepsy Warrior Boys” in the subject and I will send you our P.O. Box address.

If you would like to know more about this newly revealed seizure type for us, (Simple Partial) this is a great resource:   
https://www.epilepsyfoundation.org/aboutepilepsy/seizures/partialseizures/simplepartial/

Peace I leave with you; my peace I give you. 
I do not give to you as the world gives. 
Do not let your hearts be troubled and do not be afraid. 
(John 14:27)
prayeroffaith

Birthdays and Bittersweet Realities… and what I have learned…

Tomorrow is Brynnon’s 14th Birthday!!!
On this day it was at 2 AM exactly 3 years ago that my life changed forever. Brynon had experienced his first known 5+ minute Tonic Clonic Seizure in Jan. 2009. We were told that everyone is allowed one seizure and he wouldn’t have a seizure while sleeping again, it was very rare. We were also told it would be very unlikely that he would ever have a seizure again if he remained seizure free for a few weeks. After a year, we could no longer worry… 

Three years ago…. Brynn requested to sleep on the sofa bed that night after a friend had come for the weekend and gone home. As I sat blissfully nursing Abigail in the early morning hours… Brynn peacefully sleeping on the sofa bed. I saw him look at me, his face filled with terror. I called his name and his eyes rolled back as his body flexed and stiffened. I cried out to God and kept calling his name with no response… His lips turned blue as time seemed to stand still… I screamed for anyone in the house to come to no avail… 
I placed Abigail down and turned him to his side as his body violently convulsed… 
Mouth foaming and the painful reality that had I not let him sleep on that sofa bed, I may have never known… 911 was called… still not breathing… 

Fire engine came just as he was entering the postical stage and his body in a deep sleep finally starting to breathe… 
The intense Fear of the unknown was overwhelming… 

I watched Brynn sleep for several months on that sofa bed and began to identify different seizure types. I learned fairly quickly that he was seizing almost every night and that not all seizures were Tonic Clonic. In the year that followed I researched and learned more about Epilepsy than I had ever believed possible. I learned too that Moms have an instinct that no one else has when it comes to their precious children. I also learned that this wasn’t a simple take your medicine and it will go away issue.


This was a fight for answers battle that continues to this very day. My sweet little boy said he wanted to die with the first med… the second helped but did not give complete control… I went for a second opinion when the neurologist he was seeing wouldn’t answer phone calls and didn’t even take the time to read his 24 hour Video EEG before our visit 2 weeks after the test. The New Neurologist hit the nail on the head before any testing was even done, based on seizure history, Neuropsychologist report and all his medical files that were sent before the appointment “I believe your Son has Malformations of the Cerebral Cortex.” We did his fourth Video EEG and it was confirmed, the prior neurologist was completely missing some important information. The third medication had the same effect, helped but wouldn’t completely make the seizures go awayAnother EEG confirmed that Brynnon is “Refractory and his EEG’s looks like Encephalopathy.” Fourth and fifth medications had the same effect… Refractory or Intractable Epilepsy means that medications either do not work well or do not work at all in treatment and prevention of seizures. Sadly, about 1/3 of all Epilepsy Patients will become Refractory at some point. In Brynnon’s case, long term untreated seizures likely caused him to remain refractory. I have experienced a lot of pain in the past three years… but I have learned so much about myself in the process. I have learned too that Abba Father certainly knows exactly what we need and when we need it. I have learned to dance in the rain of uncertainty as well as how to let go of things that I have no control of. Most of all, I think I have learned that ignorance may be bliss, but it also can be dangerous. I am forever grateful to God for giving me the strength to move forward… I am also thankful for everything else I have learned… 
 I have learned what Seizure Sick looks like… 



 I have learned what the VNS can do, as well as what it cannot do… 

 I have learned that you have to work hard for the things you need, and depending on other people is not a good idea…. 

 I have learned that even even a medical professional saying the “R word” can be painful… 

 I have learned that some seizures are invisible…  

I have learned that Doctors can be uneducated too… and worse, they can be wrong. Always follow your gut and demand answers…  

I have learned that Epilepsy can affect more than one child of the same family and when it does wanting answers to WHY becomes priority more than ever before…

 I have learned that we may well feel like running from difficult times, and if you insist on running… Pleased do run in the right direction… 

 I have learned that seizures can go unnoticed even by medical professionals without the proper test…



I have learned that God gives us exactly what we need to get through trials and tribulation, sometimes they come in unexpected packages…  

 I have learned that capturing smiles is a lot more fun than capturing seizures in pictures and videos… 

 I have learned that sometimes being silly is the only way to learn to smile through and fight the seizures…

I have learned that God sends special people in your life, exactly when you need them. Friendships come from unexpected people and in the midst of tremendous storms… those sweet blessings never fade from memory…

 I have learned that a picture can tell a powerful story, but it cannot really tell the whole story… 

I have learned that our children will grow up to be men one day,

and what they see they will   repeat…  


I have learned that it really is the simple things in life that brings the most pleasure and the most precious memories… 







The past three years have brought a roller coaster ride that I never wanted to get on. I fought and cried to get off many, many times… but as everyone does, I had to learn that everyone has their own journey. It doesn’t matter what your journey brings, it matters where it takes you. Trying to remain focused on the positive in any situation helps keep peace in the midst of the most terrifying storms. Strength doesn’t come through cowering down, it comes through fighting through the storm, no matter how powerful it seems. I have learned many things in the past three years. Some things I had to fight for, some I had to fight through, some I wish I learned so much sooner and some still that I wish I never had to learn. I wish to thank all of you Epilepsy Warrior Mommies and Daddies… May God grant all you other Epilepsy Warrior Parents the strength to continue to push through. Your love and support through my journey has brought me so much knowledge and wisdom as well as strength.  
“2 Cor. 1:2 Grace be to you and peacefrom God our Father, and from the Lord Jesus Christ. 3 Blessed be God, even the Father of ourLord Jesus Christ, the Father of mercies, and the God of all comfort; 4 Who comforteth us in allour tribulation, that we may be able to comfort them which are in any trouble, by the comfortwherewith we ourselves are comforted of God. 5 For as the sufferings of Christ abound in us, soour consolation also aboundeth by Christ. 6 And whether we be afflicted , it is for your consolationand salvation, which is effectual in the enduring of the same sufferings which we also suffer : orwhether we be comforted , it is for your consolation and salvation. 7 And our hope of you isstedfast, knowing , that as ye are partakers of the sufferings, so shall ye be also of theconsolation.”

 ~Denise


prayeroffaith

Epilepsy Storms

September… not even over and it has been a month. I took Brett to a local Dr. and showed them a video of him I captured while recording Brynn having a seizure. Could be Parasomnias, could be seizures hard to tell… So we were referred to Children’s Hospital to let a Neuro view it. Due to Brynn’s history, it was decided to do a sleep deprived EEG first and order a 2 day once insurance approved it. I took Brett to Children’s Hospital to have a Sleep

Brett at Children’s

Deprived EEG on the 17th. I knew what I saw… Had no doubt that something was wrong as soon as he fell asleep. When the Technion got up and placed an extra wire on him in a precise area, I knew… Well, let me tell you…
 

Chelsea SUDEP awareness walk!

When I saw the number on the caller ID, I took a deep breath…
   Turns out that 20 minutes of sleeping was enough…
   Enough to confirm he does indeed have seizures… Enough to identify a focal area (Left Parietal). He was started on Keppra. The two day EEG is not even needed to confirm, no doubt about it he has Epilepsy.
  I was so mad that yet again a child was overlooked, ignored and medically neglected by Physicians.
I am so grateful that this one listened ..

and confirmed that yes, he did need to be sleeping to get an accurate EEG. I am so upset, that he has suffered needlessly because that Pediatrician would not listen. I do not have all the details yet, but his MRI was okay. He does have dilated blood vessels in the top part of his brain and there are blotches in them. I don’t know what this means, but it is recommended that he have a follow up MRI. The neuro said that this doesn’t have anything to do with his seizures and is not the cause of them.

I have a hard time facing and getting through the fear that Brett has the same thing as Brynn and where this will go. I have already lost precious pieces of one little boy…
I only get to see a little sparkle of the boy he once was randomly over days, weeks and months…

Brynnon 2009

Like glitter falling….
Pieces of him disappear….
The winds of seizures….
Just take his sparkles away…. 
They steal his memories and they steal his laughter…
Brynn’s seizure count by the 17th was 16, almost his whole total August seizure count. We have  just raised Brynn’s Onfi to his max. On to the next drug once this honeymoon phases out as he is now maxed out on all three drugs again…  seizure count by the 17th was 16, almost his whole August seizure count in mid month. I know this will get easier over time, just harder with Brett. I didn’t know anything about seizures or Epilepsy with Brynn. Now I not only know, I also know

what can happen. I can’t change it, I can only accept it is what it is… We will fight this Epilepsy Monster… as we reach out for the obvious answers… Why Brett and Brynn? Is this Epilepsy monster waiting in the shadows to touch another of my precious children? Where did it come from and will it be passed on by our other children or them? I layed in bed one night some time ago and watched as a seizure started.

…No panic, just prayer… It occurred to me at that moment that a seizure is like a storm. It’s like lightening in the brain causing the seizures. So I prayed “Peace Be Still.” When I heard the song “Praise You in the storm by: Casting Crowns recently… That song took on a whole new meaning. I will praise Him in the storm… That is my Epilepsy theme song now! I will dance in the hallway while waiting for the door to open… Trying not to fear what “could” be and accepting what is at the present moment.

Brett Epilepsy Alert Band 9/25/13

                 ………….. We NEED A CURE!…………..

prayeroffaith

Emotional Inventory



Every now and again it is good for the soul to do a little emotional inventory. In the church years ago, I was taught that emotions are just feelings and not to pay any attention to them. I have learned over the years, it is imperative that you do pay attention to them. The emotions are so often overlooked in the run for perfection feeding the intellect and the will of a person. If you leave emotions out of the equation, you end up taking action without evaluating how you feel about it. We may want to do something, the will says yes, but the emotions are there saying no… 

Please don’t! Tonight, I find myself thinking about so many different things. I find myself feeling all sorts of emotions. Brett went for his first neurologist visit today. He will go in a few weeks for a Video EEG & MRI. It is a strong possibility that he is indeed having seizures. He will return for an extended 48 hour Video EEG as soon as the can get the insurance approval and the appointment scheduled. His answers will come, and there are a lot of emotions that I am feeling about it all… Seems a bit overwhelming at the moment, I have so many other emotions to deal with at the same time. Gosh, it makes me so mad… Just the thought that seizures may have 


been overlooked by medical professionals once again, now in Brett is taking it’s toll on my sanity. We have been through so much these past few years in this Epilepsy battle. I refuse to give up hope, I figure worst case scenario if Brett is diagnosed with Epilepsy and is similar in any way to Brynn… Perhaps it will lead to answers as to WHY and prayerfully better solutions.

 So, my emotional inventory is being worked out as I type this. We will get through this valley as all the others that we have been forced through. Not only will we get through, but we will get through and come out stronger than ever before in faith and willingness to fight. I am a human being… I get mad, I cry and I laugh for lack of anything else in good times and bad. One thing I try to do is hold on, knowing that God would never give us more than we can handle. I just know that there is a reason and a purpose for all things, and all things work together for good in those that love God. Brynn’s seizure count for August 22, much better than last August bringing 65! Keep the faith and try, try, try to stay positive! I will post an update when  I have more answers!






   

prayeroffaith

What is Intellectual/Cognitive Disability?


What is Intellectual/Cognitive Disability? (formerly known as Retardation)

Students with MID may demonstrate some, all or a combination of the following characteristics:
  • 2-4 years behind in cognitive development which could include math, language, short attention spans, memory difficulties and delays in speech development.
  • Social Relationships are often impacted. The MID child may exhibit behavior problems, be immature, display some obsessive/compulsive behaviors and lack the understanding of verbal/non verbal clues and will often have difficulty following rules and routines.
  • Adaptive Skill Implications. (Everyday skills for functioning) These children may be clumsy, use simple language with short sentences, have minimal organization skills and will need reminders about hygiene – washing hands, brushing teeth (life skills). etc.
  • Weak Confidence is often demonstrated by MID students. These students are easily frustrated and require opportunities to improve self esteem. Lots of support will be needed to ensure they try new things and take risks in learning.
  • Concrete to Abstract thought is often missing or significantly delayed. This includes the lacking ability to understand the difference between figurative and literal language.“                                                                                                                                     Source:  http://specialed.about.com/od/handlingallbehaviortypes/a/MID.htm                                                                                                                                    
    Cognitive Disorder NOS Symptoms and Diagnosis Overview:
    Cognitive Disorder NOS symptoms and diagnostic criteria follow below. While some of these Cognitive Disorder NOS symptoms may be recognized by family, teachers, legal and medical professionals,  and others, only  properly trained mental health professionals (psychologists, psychiatrists, professional counselors etc.) can or should even attempt to make a mental health diagnosis. Many additional factors are considered in addition to the Cognitive Disorder  NOS symptoms in making proper diagnosis, including frequently medical and psychological testing considerations. This information on Cognitive Disorder NOS  symptoms and diagnostic criteria are for information purposes only and should never replace the judgement and comprehensive assessment of a trained mental health clinician.

    Cognitive Disorder Not Otherwise Specified

    This category is for disorders that are characterized by cognitive dysfunction presumed to be due to the direct physiological effect of a general medical condition that do not meet criteria for any of the specific deliriums, dementias, or amnestic disorders listed in this section and that are not better classified as Delirium Not Otherwise Specified, Dementia Not Otherwise Specified, or Amnestic Disorder Not Otherwise Specified. For cognitive dysfunction due to a specific or unknown substance, the specific Substance-Related Disorder Not Otherwise Specified category should be used. 
    Source: http://www.psychtreatment.com/mental_health_cognitive_disorders_nos.htm
    and finally….
     Recurrent, spontaneous, unprovoked seizures—that is, those associated with epilepsy—affect 3–5% of the population worldwide.[32,55] The incidence of epilepsy in childhood varies among different age groups and geographic locations. Data from a variety of epidemiological studies have indicated that recurrent unprovoked seizures occur in 1–2% of children, with the highest incidence in the 1st year of life. The incidence of epilepsy plateaus in early childhood and decreases after 10 years of age.[17,31,33] Approximately 10–40% of children with epilepsy will continue to have seizures despite optimal medical management with AEDs.[13,16,25,57] It is important to be aggressive in the diagnosis and treatment of medically refractory epilepsy in children given the adverse effect of recurrent seizures on early brain development, learning, and memory. Moreover, young children with this intractable disorder may be better candidates for aggressive surgical treatment because of the increased neuroplasticity of the developing brain.[19,23,71] Other treatment modalities, such as a ketogenic diet and vagus nerve stimulation, can be considered in children who are not good candidates for epilepsy surgery.[34,41,44,54] In this paper we review the definition of medically refractory epilepsy and consider the evaluation of children with medically intractable seizures for surgery. 
    Source: http://www.medscape.com/viewarticle/581652
    The above are descriptions of Brynn’s diagnosis to date. Home Schooling does not cause lower IQ. Epilepsy cannot be faked with recorded Video EEG Clinical Seizures. So for the two hateful, spiteful ignorant people that persistently talk about my child as though you know what your talking about…  Why don’t you get a life and stop pretending that you ever cared.