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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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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