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/

.        

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)

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

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!..............