Still More Seizures

Annie's loading dose of fosphenytoin lasted about 7 hours last night before some very subtle seizures started back up. With Aicardi Syndrome, we know that we will never get complete seizure control, but we were surprised to see even mild seizure activity after such a huge dose of anticonvulsants in the ER. Annie was incredibly sedated last night and had difficulties breathing, so we kept a close eye on her.

This morning the seizures were back as frequent as ever, occurring every 7-15 minutes. She got her first dose of oral phenytoin, so I waited to see how that might work. She continued seizing through the whole day about every 7-20 minutes, but the seizures today were much more mild than previous days, and a bit more tolerable. They didn't seem to bother Annie much until about 3:00 today when she started crying and fussing. I think she is so tired but can't get any sleep because the seizures keep her awake. So I finally gave her a full dose of Ativan to see if she would calm down enough to be able to sleep. So far it has helped her seizures, but she is still just as agitated and fussy.

We plan to continue the phenytoin to see if she just needs a bit more time on the oral form, but I think we'll have to supplement with Ativan to keep things more under control. We thought that by now Annie would start to build up enough Sabril effect in her brain that things might slow down, but apparently we're going to have to give it more time still. Annie still has a lot going on in her body and is not even close to being in her normal routines yet, especially with her sleep. Unfortunately, all of those disruptions can also contribute to more seizures.

With all of her seizures lately manifesting on the left side of her body, we are concerned that she has some kind of problem in the right side of her brain. That could be anything from a blood clot, damage from an undiagnosed stroke, increasing intercranial pressure, a tumor, or localized brain damage from seizures. We don't really know. And we don't even know if there's a new physical change in her brain causing these new seizures at all. It still might just be the sudden loss of her Sabril from all her vomiting that is to blame. It's just so hard to know for sure. The MRI of her brain is on October 9th, but that seems like such a long ways away. We are anxious to get that done and see what's going on in there, if anything.

Today I took Annie to see her gastroenterologist. He is fantastic and sat and talked with me at length about how Annie has been doing since being discharged. Even though her hemoglobin is still low, we are going to hold off on starting back on her iron supplements because they can be pretty hard on the GI tract. We suspect that Annie just needs more time on her normal diet again to recover. We'll check her blood levels in another month to see where she is, and then possibly consider starting the iron again. Next month we'll also re-check her ESR and CRP, and some other things as well. We also decided that because Annie has a history of c-diff with antibiotic use, we'll start her on probiotics to help keep her gut bacteria well balanced while we're treating another UTI.

We're so eager to get her feeling better again. It's becoming physically and mentally taxing as Annie is requiring continual 24 hour monitoring and care and lots of appointments and testing. Thankfully, Molly and Lexie have been extremely patient and responsible in taking care of themselves and even helping quite a bit around the house. We much prefer having Annie at home than at the hospital. We just keep praying that these seizures will let up and Annie will be able to get some rest soon and get back to her normal self.