Brainwaves

>> Monday, June 8, 2009

On Thursday, June 4th, 2009 we opened the door to a new possibility: we caught 6 seizures on 24 hour EEG.


It's an unimaginable dichotomy. Wanting a seizure to occur in your 6 year old. Praying for the very thing you pray against every night before bedtime. But it is the single most important event in our struggle to determine what is causing his Epilepsy. No test before has been as crucial. We were almost sure he would have multiple events that night, he has been having nights like that for weeks. One a night, at least, for over a year and half. I don't like to actually do the math but that's over 400 seizures. That will suck the fun out of the room.

It was his 5th EEG and the first to catch an event.

We checked in at 10:30am (give or take) to the RTU at Primary Children's Hospital and had originally requested sedation to keep him calm while the leads where attached, but at the last minute we decided to try it Au naturale. Annie and Dennis took their time setting up for the 'great taping' and because of this, Annie wired him up VERY quickly (SHE IS THE BEST!). She taped all the leads (this would become a battle later), wrapped his head as tightly as possible, put the lead box in a bag and, with Bug's Murse tossed over his shoulder, we were off. I had bought him new toys to attempt to keep him interested and somewhat calm. He picked out a few of his new favorites, played with them off and on sporadically, which really meant I spent my day keeping him away from the door. I noticed that the chart said: Absence Seizures and POSSIBLE Tonic Clonic. This pissed me the hell right off. We NEVER said that. He first seizure was a FULL Tonic Clonic and he has had EVERY type since that time. You name it...he has had it. So to see POSSIBLE T/C....yea, did NOT go over well with Mom. But he showed them.

Daddy was working remotely and had several long calls over the course of the day. I found myself resentful at times. It was a childish emotion and I pushed it aside almost as quickly as I conjured it up. Still, it was a long day of Bug sitting on my lap, pulling my hair, giggling and then kissing me. He is a sweet boy and yet a very tiring boy all the same.

I called my parents and asked them to bring Papa down to entertain Bug. Bug adores his Grandfather (and his Grandmother) so I thought it might give him something to take his mind off of the head wrap that was driving him slightly mad. They came down, ate dinner with us, played with Bug, Mom insulted the Doctor (not her fault, she didn't know there was AUDIO and VIDEO), and he tired himself out.

I was dreading sleep for him. As much as we needed to get them recorded, I still do NOT want him to ever have them again. But, this is the first really useful step, so Glenn and I hovered as he drifted off. He woke up abruptly a few minutes later and we thought we might have one..but no..he wandered around a little bit and crawled into my lap. He was asleep for about 15 minutes when I felt him tighten up and heard that little partial scream. Before Glenn could notice I told him: Seizure. I moved Bug to the bed so the video camera could capture the whole thing and Glenn called out the time. His new seizures last less than 20 seconds. A far cry better than the 3+ minute full T/C of the past but still makes a Mom want to cry. We were happy, at last, to see the pattern on the EEG machine and we breathed a collective sigh.

Now, everything about being a parent screams: protect him and the logical creatures scream GET SOME SLEEP. So I tried to sleep on the sofa sleeper while Glenn slept next to Bug. The problem with sleeping in a hospital, for those of you that have never done it, is the vitals check every hour. EVERY hour the nurse, or her minion, enters, not always quietly, and checks the patients vital signs. Yep, when we were asleep it was not long before a door opening would awaken us. Even more troublesome for me were the other crying children. Every little noise would startle me awake and I would look over at Bug, sleeping contently. Glenn would smile at me and say: He's fine. We did this every 20 minutes or so for the first few hours he slept. This is our life.

By 7am he had had 6 large events and 1 small...and we got them all. It was very exciting, as much as it can be. Mike the pediatrician visited us and gave him the thumbs up to go home. Asked us if it was eventful and we both beamed: yes! He congratulated us and wished us the best. THIS is why we LOVE UTAH! After a while, his Nurse came in and told us the EEG tech had told her to remove his leads so we didn't have to wait anymore. Oh, OK. I started to film the event but had to stop because the tape was pulling Bug's hair. And he was pissed. It took all three of us to remove it. I haven't seen him cry like that in a long long time. When we were finally successful and he was freed, Glenn let him go and Bug promptly smacked ME! I take it he thought I wasn't supposed to hurt him but the other two could. No idea but it's over.

We left before 10am on the 5th, tired, VERY tired, and postulating about how much this would help in the long run. All the while, Bug was babbling MaMa MaMa in the back seat.

I have spent my time searching the Internet for a similar EEG seizure pattern and it's diagnosis. At one point, I thought it looked like temporal seizures but alas, I was wrong...I think. This is what we do, we get the tests and then we search for our own possibilities. It is important to be a partner with the Doctor, to participate and not just react. To be able to say: Wait a minute, when caution is called for. And we wait. We wait for his appointment on the 11th with Dr. Van Orman at Primary Children's. And we pray that someone recognizes the pattern and that it can be addressed more aggressively without losing our little boy again.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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