We had each other, and then we had Lily, and now we have everything. Lilliana has tuberous sclerosis. This is our journey and our fight of this disease. And more importantly, our determination to live well and fully in spite of it!
Friday, September 18, 2009
Keppra
Since the phenobarbital is not completely controlling Lily's seizures anymore, we have started Keppra. It was one of the safer drugs to choose from, so we decided to try it first. We've had some results...the tonic seizures have slowed down quite a bit; however, the infantile spasms are still occuring a few times a day (typically they come in clusters that last about 5 - 7 minutes). The doctor is increasing her dosage over the next week to see if we can get the spasms to stop. If they do not, then we have to move on to stronger more dangerous drugs (due to side effects). Let's cross our fingers!
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