September 22nd: Still Seizing

Annie is continuing to have seizures. We are giving her Ativan twice a day to keep the seizures down, but 5-6 hours after each dose, the seizures start to mildly come back and build up until we give her next dose. The Ativan is very sedating and Annie is almost non-responsive when she has it in her system. It can also suppress her breathing, and since Annie easily obstructs, we watch her really closely around the clock. So Annie is not awake much and when she is, she is groggy from the Ativan or worn out from the seizures.

This frequency of seizures is not normal for her and she hasn't had this level of seizure activity since she was a baby. What we think is going on is that we are finally seeing the effects of her lack of seizure meds about 3 weeks ago. When she was first admitted to the hospital on August 26th, Annie had been throwing up for almost a week, and she continued to throw up for about another week in the hospital. During this time, she often vomited after getting her morning and evening meds, including her regular seizure medication. It's hard to know how much of her medication was thrown up and how much was absorbed, but we believe she threw up probably the majority of her seizure medication over several days. (Her seizure med has no IV formulation, so there was no other way to deliver it.)

Annie's seizure med is called Sabril or vigabatrin and it has a delayed response in the body. Justin could give you much more information regarding how Sabril works with enzymes in the brain to prevent seizures. But basically, when a person starts Sabril, it typically takes about 3 weeks for the medication to reach its full therapeutic level and become effective at reducing seizures. So we believe that Annie's lack of Sabril due to vomiting about 3 weeks ago has finally caught up with her and we're now seeing that effect. So we anticipate, and hope, that in a few days, Annie will come out of this Sabril trough and it will start being more effective for her. We still plan to update her neurologist tomorrow and see if different adjustments need to made, even just temporarily, to get Annie through this high seizure period until her Sabril fully kicks in again.

Annie is doing ok except for these nearly constant seizures and the heavy sedation that the Ativan brings. She's on her oral antibiotic for her UTI and we'll find out tomorrow for sure if the bacteria are susceptible to this particular antibiotic. Annie is having higher temperatures than normal, but not yet in technical fever range. She's continuing to tolerate her feeds well and is staying hydrated. If only we can get these seizures to stop. We miss our perky girl.

This week we meet with nearly all her specialists at her annual CDC appointment, so that will be great to troubleshoot and brainstorm all together. Then the following day we visit her GI doctor too. We are really praying that this week is a week of big improvements. Thank you so much for all of your continued prayers.