Well, we are not making a lot of progress right now. We went to Emory last week and they adjusted her diet so that her blood sugar doesn't drop throughout the day. They are worried about the possibility of acidosis which one of her meds can make worse. We are weaning her off of this medicine for that reason and also because it has really bad side effects. We have already seen so many side effects and not sure if it's from the two meds or the huge number of spasms she is still having... Probably a combination of all.
We noticed immediately after we started weaning the medicine that she was having extreme withdrawal symptoms. She is very irritable, lethargic and not active at all. She slept 16.5 hours the first day on a lower dose. She has stopped smiling and playing. The diet has such a small amount of carbs that she doesn't have much energy to begin with and when she has seizures it takes all she has. The goal of taking her off this medicine is to see more energy, muscle tone and hopefully she can learn how to hold her head up again. So far she is much more alert but also more aware of her seizures. When she has them she screams during every one. So yes, we are talking about 250+ blood curdling screams a day. Yesterday she had a better day.. Still 250 spasms but she smiled once and its been weeks since she has smiled at me. It's the little things that are so important right now.
Our next step is to have an ERG.
An Electroretinography (ERG) is an eye test in which electrodes are placed on the cornea to measure electrical responses to light in an effort to detect abnormal retinal function. We are deciding if trying another medicine is the next step. Many children with Aicardi have seen drastic reduction in the number of spasms on this medicine. The drug can cause permanent vision loss and is pretty scary to try but we have no other choices right now. Unfortunately, vision loss trumps brain damage from seizures, but they both are pretty much equally crappy to me. To even begin this medicine she has to have a baseline ERG done and have it repeated every three months to make sure her vision isn't affected. Luckily Emory offers this service because it's not a routine procedure. We go on February 3 to have this done.
We have started working with the Tennessee early intervention program because of her developmental delays. We will have an evaluator come out next week to determine what she needs. They will work out a program and someone will come out every week and work with her and show me what to do.
Justin is in Canada for 6 days at his yearly company meeting.He is having a good time so far. It's freezing cold and covered in snow. He will be back on Saturday so pray for a safe trip home!
While he has been gone I have really been able to spend my time loving on this sweet little girl and learning how to adapt to her needs. Since she is so angry most of the time we do a lot of relaxing activities. We have always played music so I'm continuing to do so but I've found out she likes hearing us read to her. I tried reading some kids books but she would cry when they were over so I thought I would try something longer. I pulled out the Harry potter series and read for hours. I kept saying I wanted to read them again, here is my chance! She just looks and listens which makes me happy.
Every day is a challenge. We continue to pray and take it a day at a time.