That's how long it took us to get the answers we were searching for! Lets start from my previous post, since keeping up hasn't been easy. The results from Brayden's 90 min sleep deprived EEG came back normal as you probably could have guessed. At this point I knew it was true...the only way to be heard, or taken seriously would be to record Brayden's episodes. So armed with my phone set on video capture and in my pocket at all times, I did one of the hardest things I knew I had to do. It's human nature for a mom to comfort their child so to take myself out of that frame of mind to get this done was difficult. I got the last 30 seconds of the full episode, but thankfully it was enough. So here it is...
After taking this I called the pediatrician to share the "good news": I have a video. She told me not to worry about bringing the video and Brayden to her. Call the Neuro right away and schedule the appt. So I did. I was nervous that the short video wouldn't be enough, that they would want to see this from the beginning. Fortunately, I was wrong. The Neurologist, Dr. Lang at A.I. Dupont was shocked. Her exact words: "Oh, wow. Wow. Do you mind if I take this to my colleagues"? Obviously, I didn't mind, show everyone you know if it will get us what we've been searching for. I sat in the exam room with Brayden, saddened and relieved. This was the beginning of finding out what was "wrong" with our son. She came back with the video immediately saying we had to schedule a 24hr VEEG (Video EEG). She looked at the video again with me as I explained what led up to this video, the way Brayden was acting. I stressed to her, that this was NOT preceded by a BHS, he was not crying, hurt or upset for any reason. He had been sitting on my lap, suddenly started squirming around and trying to, for lack of better words, hide in my chest. Yes he was upset about something...but what? I sense that he feels these episodes coming on and that's what triggers the upset. She pointed out parts of this video that are characteristics of seizures that I had not even picked up on. To this day it is hard for me to watch it. It's permanent evidence of a difficult time in my sons life. One I hope he grows out of before he is old enough to realize or remember (he will be 3 in July). Moving on...
24hr VEEG 12/27/12
I know some of you may read this and think, who in their right mind schedules 24 hr testing on their child right after Christmas. Trust me there was logic behind it! On Christmas day Brayden unwrapped his gifts. Since the amount of presents can be a bit overwhelming for a child that age, I packed a few things for the hospital right away. This way it would be a brand new distraction! This VEEG was not a sleep deprived test, however, we did have to stay overnight at Dupont.
My sister had a sleepover at her house for my older boys. My mom and younger sister stayed as well to help, and add to the fun. Brayden and I left for the hospital at 9:30am. After getting registered, admitted, and a half hour electrode application process, we were in a room. I admit I was nervous about how Brayden would handle all of this. He was confined to a bed, with 21 electrodes glued to his head and wrapped in gauze. I was prepared for this to be a rough day/night.
Getting through registration and admissions. All hooked up and ready to go!
I need to take a minute to brag about my amazing son! He handled this extremely well. He was pleasant, and calm. Unlike I had seen him in a long time. Yes, I did pack a good bit of toys and distractions, but I can't even take credit for that because it still could have gone horribly. I was in complete awe of my 2 year old little man, as he faced what no child should have to face.
We played... He napped.....
We played with toys the nurses gave him... He ate.
He was amazing! We watched TV, I taught him how to make his bed go up and down, lol! It was late when he finally fell asleep. I was awake through the night. Kept an eye on him, on the monitors. I realized something happening with the tracings. A few times during the night, his heart rate would jump from 84 BPM to 147 BPM, at the same time the brain waves would go crazy. He would start tossing and turning, but not stiffening or arching that you see in the video. I made sure to tell the nurse in the morning.
Morning came and Brayden woke up, pleasant again. It was as if he knew it was time to get unhooked, lol 
Good Morning! Unwrapped... ...and unhooked!
As you can imagine, there was quite a lot of time between being unhooked and being discharged, lol. After being cooped up in a hospital bed for 24 hrs, you can imagine my 2yr old was bouncing off the walls of the hospital! We let it go and even went for a few wagon rides before we left! He deserved it!
My happy boy :) On our way home!
It can take up to 3 weeks for the results, as they have to match all the video with the EEG, and EKG readings. I tried to be patient, but as the days and weeks passed and the episodes continued my patience was wearing thin. One morning Brayden had 3 back to back episodes. He was having a hard time recovering. I was a wreck from it, thinking about how I would have to leave for work soon, and leave him again, like I have in the past, hoping he would be ok. Constantly calling to check on him. A bundle of nerves. That was the day I quit my job. I decided, that regardless of whether we got answers or not. I couldn't leave him in this condition anymore. And I couldn't leave the possible responsibility of his care in the hands of some one else. I was his mom, I was going to see him through this. Thank God for a supportive, understanding, hard working husband!
Thank you God!
During those weeks of waiting, I did a lot of praying. Prayed that God would guide the professionals looking at the testing. Prayed for results. Prayed that whatever the results were, He would give me the strength and the patience to keep going. We got our answers! The testing showed that Brayden has cortical abnormalities, and convulsive syncope. The doctor stated that they picked up several BHS during the testing. I mentioned that this was odd, since he did not have one episode. In fact, he was more pleasant and calm than I have seen him in a long time. She was a little stunned by this. It seems his heart and brain/nervous system are having these abnormal occurances without him even having physical episodes. The doctor feels that the more severe the occurance, the seizure will prevent itself.
What's next?
The prognosis is that as kids with this condition grow and their bodies mature they grow out of it. There is a very small percentage of kids who develop epilepsy as teens and young adults. We started Brayden on a trial of Keppra in January. By the end of the first week, I wasn't seeing any improvement at all in Brayden. We were still dealing with 2-4 seizures a day, and several severe BHS. I called the Dr, to see how long for the medicine to establish itself in his body, and results to be seen. She was shocked that he was still having seizures. She increased his dose from 1.5ml, to 2ml. This seemed to have a good effect on the seizures. There was a significant decrease in the seizures. However, on the higher dose, I began to see a side effect I was hoping we wouldn't. Keppra Rage. Similar to "Roid Rage", children on Keppra can experience changes in personality including moodines (which lead to increased BHS), and aggressive behavior. The aggression is what worried me most. Again, I called the doctor. After discussing the progress with the seizures, and the side effects of the higher dose, we decided the best option was to start Brayden on a B6 supplement of 25mg. Keppra, depletes the bodies supply of B6 which can cause these mood swings and aggressive behaviors, so we had to replenish. We saw immediate results! We went days without seizures or mood swings or aggressive behavior. Brayden was happy, energetic, goofy! It was such a pleasure to see my little boy again.
Our Roller Coaster Ride
Here we are April 3, 2013. Almost 3 months since diagnosis and beginning of treatment. The doctor, in our initial conversation warned me that it would be a frustrating journey, with ups and downs, follow up calls and visits. Every child is different so finding what works for Brayden would be trial and error. Each time I know I have to call the doctor to report progress or lack there of, I feel my stomach turn. Having to make such heavy decisions for yourself is one thing. Knowing your choice only directly effects the life of your child is a whole other weight, that is very unpleasant for me. His ups and downs are caused by my choices. It saddens me that this far in, we haven't yet found what works for him. I pray that the next choice I make will hold his relief. That it will bring back the son I know is still there. That he will be able to experience the pleasure of being a 2 yr old again...before he turns 3 in July. I write this as I hesitate to call the doctor to report the return of the aggression and moodiness, and yes the return of the seizures.
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