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/
.
