Hmmm....

>> Friday, August 5, 2011

Very curious...he had a few quick events when he woke up but after his meds at 8:30 he seemed better. He was playful, cognizant, just overall happy.

Now he is asleep in my arms after 2 seizures in 45 minutes. The last one was longish too. We may not have complete seizure control yet but his cognition level is a lot higher.

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August 4, 2011

>> Thursday, August 4, 2011

Today started out less than stellar. Bug had a hard time going to sleep but by 11:30, the battle was over and he slept somewhat soundly all night. When he awoke, he was pensive. Wanted to cuddle and a few minutes later, seizure number 1.

I gave him his medication and he followed number 1 up with numbers 2, 3, 4 and 5. Every 15 minutes. THIS is Bug clustering. To remind everyone (all 1 of you) clustering is one seizure after another, after another. Status is one LONG seizure, or seizures close enough together that the brain has little else it can do but mis-fire. So, I got the Diastat ready but he came out of it.

He came out of it when his meds kicked in. Oh hooray! He has NEVER been able to do that, we have ALWAYS had to administer Diastat. One more vote for the medicine tri-fecta.

Even though it started out crappy, he is his old self. Playing, climbing, smiling and scrounging. It's a far cry from how he was yesterday.

Yesterday just sucked. Plain and simple. He had at least 5 during the day, and that was with me giving him a maintenance dose of Dilantin at 4:00. I still believe he is burning through the medication too rapidly. We will address this with Shari on the 22nd. He will get a blood draw on the 21st and she will have the levels to look through. We have a lot to talk about. Hope she is up for it, because Daddy will be there as well. Tag team. Bwah ha ha.

Yesterday Mid Day
2ml Dilantin

Yesterday PM
5mg Phenobarbital
2ml Dilantin
200mg Lamictal
.5 Clonazepam

Today AM
2.5ml Dilantin
200mg Lamictal
.5 Clonazpepam
800mg Folic Acid (MTHFR helper)

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Later that day...

>> Wednesday, August 3, 2011

he perked up and began doing things we havent't seen in YEARS. Literally years. He ate with a spoon, without being prompted. He smiled all the time and played with his sister. He was steady on his feet and expressed on opinion when I was cleaning the dried blood from his nose (nosebleed earlier that morning because he couldn't breathe well and I had to clean him out). He actually grunted at me. ALL great signs.

I could tell immediately when his medications wore off, he became less active and didn't smile as much. I was worried but also at Taylor's archery class so I just watched him. Sure enough, he siezed. He wanted to cuddle with me, so when I put him on my lap, not even 5 minutes later, he had a Tonic that went slightly Clonic and then IMMEDIATELY out of it. Taylor saw it as she was walking back from shooting her arrows. We were both sad but I knew it was just a tough in his medicines.

We got home, I medicated him again (right on their schedule) and a half hour later, he had another, although milder. And then, no more that night. NO MORE THAT NIGHT.

He had two more this AM (once he burned through his medication) and since he has taken his Lamictal, Dilantin and Clonazepam he hasn't had any. Of course, he is sleeping still, but I would too if I had two, maybe three seizures, in less than 2 hours.

So, I called once his went to sleep and left the message that we wanted to extend the script for the Dilantin, at the full dose (I am doing a lower dose than reccommended but higher than what he is supposed to be on) until we can talk to Shari on the 22nd of this month. I will NOT let this opportinuty to help him go by. Will not. Fingers crossed they call back today and give us the OK.

PM Dosage
2.5ml Dilantin
200mg Lamictal
.5 Clonazepam

AM Dosage
2.5ml Dilantin
200mg Lamictal
.5 Clonazepam

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Yesterday and a Change

>> Tuesday, August 2, 2011

Sucked. He had a total of 5 seizures, most were less than 10 seconds and Tonic. I had hoped that he would sleep it off but he woke up early, came into our room, cuddled with me and had a Tonic/Clonic.

So after some discussion, we decided to try a heavier dose of Dilantin and Lamictal. As of this moment, he is doing really well. Watching TV, responding to Taylor hugging him and just seems to be happier in general.

He is a little wobbly but he thinks it's funny. Good to see.

Now, let's just keep the seizures away.

Meds AM

200 Lamictal
2.5 Dilantin
.5 Clonazepam

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Oh C'mon!

>> Monday, August 1, 2011

Facial tics? Really?

So I look it up and sure enough, Phenobarbital withdrawal (even slowly) can cause facial tics. Nice.

We decided to reduce the Pheno because of his fatigue and lack of moving. His muscles are atrophying, as well losing more weight, he still isn't eating well, he couldn't keep his eyes open and his sleep pattern was incredibly off. As we know, sleep disturbances can increase seizure activity. So we decreased it and upped the Lamictal. Suddenly, we have a smiling boy who can walk down the hall again. Sure, he is still a little trippy dippy but so much better he is eating eggs and hot dogs again.

He has become a guerrilla cuddler, which is interesting. When Nana and Papa leave, later today, I am in real lap trouble. ;)

He has had 4 seizures the last two days and started the first two hours this morning with 2. As far as his seizures go, they aren't bad ones. Tonic lasting less than 30 seconds and he immediately comes out of them. In fact, he had one standing and didn't fall over, he was able to catch himself and continue spinning the stylus for the Doodle Pro.

Hoping that his Lamictal level increases and the seizures decrease again. I'll settle for one a week. Sigh.

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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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