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We were really trying to avoid Sabril because of the warnings of the possibility of permanent eye damage, but after trying several other drugs with little to no improvement in James’ infantile spasms, we were left with no choice. He was first diagnosed with infantile spasms on February, seven months ago, and they are not getting better.
So, after Stacy and I basically had to sign away James’ eyes (in the event that they become damaged), Sabril arrived yesterday. We will be following this dosage schedule:
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- 1 package, 1 time a day for 7 days
- 1 package, 2 times a day for 7 days
- 1 package in the morning and 2 packages in the evening
We gave James the first dose this morning at 8:00 am. We’re not sure if this is a side effect, but he has been awake more today than he has been since he was born. He usually sleeps for a good chunk of the day. Stacy and I actually had to try to keep him entertained. This is not a bad thing; we’re just not used to it.
“God, please don’t take James’ eyes. And please use this Sabril to take away these damn infantile spasms!”
