Morning Update - January 28 2010

>> Thursday, January 28, 2010

6 events. All before 1:00am. After that, he slept really well. 11 hours total. We will give him the Zonegran earlier in the evening to see if it will reach maximum potency before bedtime. Sigh.

175mg Lamictal
8ml Keppra
125mg Zonegran

He came home from school and ate and ate. Drank an incredible amount too. 6 glasses of water and 3 glasses of coke. The coke is unusual for him. He will do one glass maximum but he kept stealing other peoples coke so I kept supplying it to him. Cut him off at 3 though, a little worried about the caffeine so MAYBE that contributed to his increased seizure activity.

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Morning Update - January 27 2010

>> Wednesday, January 27, 2010

4 events. All before midnight and then he slept perfectly until 10am. He seems to be sleeping longer on the increased dosage of Zonegran. Bummer about the seizures though.

175mg Lamictal
8ml Keppra
125mg Zonegran

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Morning Update January 25, 2010

>> Monday, January 25, 2010

No events.

Hoorah. And boy was he telling me something at breakfast. NO idea WHAT but he was telling me something. Really cute. I need to film him, cuz the kid is adorable now, frustrating at times, but mostly a fabulous little boy. I look back at those rough years and think: how did we get through it. And then I realize, I don't care how we did it, just that we did. And he will just grow from here.

175mg Lamictal
8ml Keppra
125mg Zonegran

ALSO:

125mg Morning Lamictal

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Morning Update - January 24, 2010

>> Sunday, January 24, 2010

No events.

Boy was he active all day. And eating constantly. I suppose I should detail what he eats too...maybe in the near future.

He is beginning to do things he used to do when he was 3. So much so that Glenn ad I thought he might dance to Garfield again. We put the movie on and watched him. We watched him not even respond. We both deflated a little but not too much. It's important that we don't look back except to learn. It's much harder to see who he was and miss that little boy all the while missing out on the little boy he IS now. Because he is fun, he smiles and cuddles, and that's a great thing. So we need to enjoy the here and now because their possibly could be no tomorrow. One never knows, when one never knows what is causing a medical condition. It's best to just get out and have fun while the sun still shines.

175mg Lamictal
8ml Keppra
125mg Zonegran

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Morning Update - January 23, 2010

>> Saturday, January 23, 2010

Good night. Relatively.

I think we had a real breakthrough seizure. Meaning that he had ONE. On the same dosage of medication, he had ONE, within one hour of sleeping and it was 20 seconds. He usually just clusters one after another once they start. But he only had ONE. More like a breakthrough event than a failure of the medication. Fingers crossed.

175mg Lamictal
8ml Keppra
125 Zonegran

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Morning Update January 22 2010

>> Friday, January 22, 2010

I thought we were in for real trouble. Bug was LITERALLY jumping up and down with great aggression for HOURS before bedtime. Glenn and I thought: Uh Oh. Get the Diastat ready and we laid him down with 125mg of Zonegran, 175mg of Lamictal and 8ml of Keppra. And after 10 minutes or reminding him to lay back down, he was asleep. The anticipation began.

Apparently, I was tired. I fell asleep shortly after Bug and didn't wake until the morning sun was shining on my face. Wow.

Glenn has been sleeping on Bug's side of the bed while my knee heals and so I waited for them to wake before I was sure he hadn't had any events. He hadn't. Hmmmm. Recap time.

Jan 16 - Upped the Zonegran No events.
Jan 17 - No events
Jan 18 - Ran out of Keppra, 5 events. :(
Jan 19 - Lamictal 175mg, Keppra 8ml and 125mg Zonegran with no events except one during a nap mid day.
Jan 20 - No events
Jan 21 - No events

You bet that Dr. Van Orman is going to hear about this.

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Time for morning updates again!

>> Thursday, January 21, 2010

Bug has been sick. He and Tay have been trading colds. It's been gross. When he is sick he usually clusters badly at the beginning of the cold and at the end. It's curious. We try to not use Antihistamines because they lower the seizure threshold. But yesterday he was too congested and wouldn't eat or drink so we gave him some and he had more energy. We thought we were in for a long night but...

We researched his dosages now that he weighs more and decided to him him by ONE 25mg pill. We did this AFTER I read that he could have TRIPLE what he was prescribed because of his weight. Yet, when I ask Shari about upping she tells me he is on the max. I think she needs the new literature. Since we upped that ONE pill he has been seizure free. Until we ran out of Keppra.

So let's count 3 perfect nights with 175mg of Lamictal, 125mg of Zonegran and 8ml of Keppra. 1 night of 5 seizures with no Keppra. So either we up the Zonegran more or Dr. Van Orman needs to make me a standing order for blood work so we can just verify that his liver and kidneys are all good and keep him on the three. He was jabbering like crazy at Glenn and I so the extra Zonegran doesn't seem to subdue his talking efforts.

But what pisses me off the most is that after the mix up with refilling the Keppra...Shari gave him NO refills. If it works...and he tolerates it...so I have to call and get another appointment so I can argue 'idiopathic' and 'not responding to medication' with a Doctor and his staff. THIS is why mandatory coverage means NOTHING to me. I have had to select his course of treatment contrary to what his Doctor wanted. He said we would try it and then remove the Keppra because he doesn't like a three drug treatment. Well I really don't care WHAT HE likes if it brings Bug the peace he deserves. More research coming and still haven't ruled out finding another Doctor.

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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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