Today was another hospital day for us. Liam had an EEG in the morning, then we met with Liam and Olivia's neurologist in the afternoon. Liam still is having seizure activity in his frontal lobes, especially while sleeping, which is what I was trying to tell them back in September a couple weeks after our visit. When he naps during the day his eyes are often half open, and not rolled back at all. He is also very "jerky" is the way I'd put it, very restless and his limbs often twitch. He upped Liam's evening med dose, so we'll see how that does.
Olivia's other doctors called this morning on our way in to town to ask when we were coming to the neuro appt. She said that Olivia's neutrophil counts were 710 and quite low and they were concerned and thought it could be related to either her seizure med or one of her HIV meds. I was stunned for a moment, because her counts being low is certainly not news. She made it seem like I didn't know about this at all and was basically acting how I thought she should have acted after they first got these results, and before our next three month appt when we first found out, and then again a week later when we confirmed they were still low at this past appt. So strange! I questioned it and she said she had talked to the doctor about it and he was concerned and she wanted to keep me in the loop. OH, so you hadn't talked with the doctor before and now that he's concerned you are too??? OK, whatever. Anyway, she talked to Olivia's neurologist about lowering her seizure med since that could be the one causing it and I was not happy about that. Her counts have gone low before and a med was changed, before she began her seizures. She's been on this med quite some time and it's done wonders for her seizures, plus they have said from day one that this is the best and safest seizure med for her and her type of seizures. ! He is going to cut back her morning dose, and said that he could also cut back her evening one as well if need be, but that's it. I agree. I know I'm "just a parent" but I don't think it's that med. Either something else is going on or it's one of her other meds. I don't like playing with her seizure meds at all, they were bad when this all started and I think we had a year or more of other symptoms before it was diagnosed. I DON'T want her to go back to some of those issues again at all! :( Definately praying for the doctors and for whatever is going on with her counts.
1 month ago