Sophia upped her medication dosage today. We went from one pill in the evening to two pills, one in the morning and one in the evening. She is still not at a 'therapeutic level' but the doctors are going to continue to monitor her closely as we continue to slowly raise the dosage over the next two months.
She goes back to the doctor on April 30Th, for another EEG, and they are going do blood work to check her liver function and blood sugar. Her liver has had to work overtime since she was very little because of all the medication that she has been on. Last time her liver enzymes were extremely high so our new doctor is going to monitor that close. Have I mentioned how much I love our new doctor!!??? The blood sugar is just to check because when she has seizures it causes her blood sugar to go high so we like to keep check on it when she isn't having seizures just to have something to compare.
She seemed to do good today with the extra pill. She doesn't really like taking medication but I am glad that as she is getting old (3 and a half) she is understanding that she has to take it to keep her healthy. She cried yesterday and said that she hated to take medicine but she hated the doctor in the hospital even more than the pill so she'd go ahead and take it. Poor baby. I wish she didn't have to take any pills. I am just so thankful that so far she doesn't have any side effects from the medication. She doesn't seem any more tired than normal, not as moody as when she was on Trileptal.. I am hopeful but I also keep reminding myself that she is only on a very low low dosage and that can change.
If the medication controls the seizures though we are on the right track.
I just can't believe we are back to this place again. I was so positive that she was done having seizures.. 8 months was her longest stretch and it was a good run! I am also... thankful to God for a solid diagnosis (even though it wasn't what I wanted to hear I am grateful that we know have a name as to what the problem is).
Oh, keep my friend Megan in your prayers. Her son had a facial seizure on Sunday and they found out that it was from the ammonia levels in his blood being high from problems with his kidneys. They are at children's hospital until they can do further testing to figure out the problem. My heart goes out to her.. I know how it feels to sit in that hospital and wait and wait for an answer. Lifting up baby Colt tonight.