*I copy and pasted this from a message board I frequent so some of it may be repetitive from the EEG post last Thursday.*
After Alyssa’s EEG last week her neuro and I sat and talked for about a half hour. I *love* him even though in the beginning he was truly a challenge to warm up to, had low expectations for Alyssa, and had the personality of a sponge. 😉 Now … he lights up when he enters the room and sees Alyssa’s smile, he marvels at everything she has accomplished, and he is fighting along side of us to try to get her seizures as halted as possible.
The EEG showed that we are pretty much back to the same brain activity that was occurring in Sept of ’08. What that means is while awake she is almost completely seizure free but while sleeping her brain is in an almost continuous “spike cycle.” She isn’t seizing outwardly much (about once every other night and only if she’s had a hard time falling asleep) but there is worry that it is preventing her from converting daily memories and new tasks. Back in Sept of ’08 we tried her on a drug that has minimal side effects because of her age, but it increased her seizures notably (of course this is also when she was most malnourished…so who knows ) so we discontinued the use. She was doing really well once her G-tube was placed last July but we are slowly slipping back into the old routine.
At any rate, I’m long-winded but we are trying a new med (valproic acid for those of you familiar) and the side effects are… well not ones you want your baby to face. At the same time, the phenobarbital she has been on since she was 3 days old is no picnic either. We are not going into it blind. She will have regular blood tests to ensure that her pancreas and liver are functioning well. Once we pass the six month mark we should know that her body is tolerating it well. The main hope of hopes is that in two weeks her liver function will maintain and we can begin weaning her off of phenobarbital. However, that is scary as well. It’s just a transition that I knew we’d be up against sooner than later. He put it off till her 3rd birthday and then I pleaded to put it off until school released. However, her teacher and I had a heart to heart about it and she, the neuro, Neil, and I all agree that the communication level is strong enough that we can handle it during school.
He is cautiously optimistic, which is so out of character… he’s not usually an optimist LOL! At any rate, he said he does not want to downplay the side effects or the risks of weaning her off of a drug that she has been on since birth… buuuut phenobarbital is something her body is learning to work around AND if we can get the spikes to stop at night… well odds are she will flourish even more than she is now.
If you could just think happy “Alyssa’s organs being super awesome and her brain cooperating” thoughts we would greatly appreciate it. I squeezed her and prayed this morning before giving her the first dose. I hate meds but if they can help her to reach the most awesome level of who she is… I cannot let my worry hold her back. So, I’ve decided worrying about it won’t change it… we’ll take action, do it with info and preparation under our belts, and hope that it unlocks a part of her that will amaze us even more than she already has