Ok so on the serious side.......something is up. Two years ago Lily had a battery of evaluations by Akron Children Hospital (OT, PT, and ST) as well as evaluations by the Green school district to make sure she was on target for her age, etc and she was. Well between then and now something has changed. Lily is having problems in almost all areas of school.
Now I won't tell you that I was totally calm and rational about this when I first found out. Actually the whole way home from my meeting with the school I cried my eyes out, the worst case possibility tormenting me in my mind. That this was the Canavan progressing and of course right before we would be out of the woods (as we have been told by some researchers...if she hits 6 with no change she will be fine as far as the Canavan goes, she will be six in Jan). Anyway that weekend I spent the days acting calm and collected, however when I tried to sleep my mind would not rest. Visions of my daughter losing her ability to swallow, speak, walk haunted me that weekend. Nights filled with hysterical sobbing alone in the dark until I was too exhausted to think. It didn't help at all that I was coming down with an illness either which always increases my anxiety.
Monday rolls around and I realize I am doing the very thing I have criticized others of doing. That would be thinking that ANYTHING that goes wrong with Lily is the Canavan when there are other possibilities. So let me break down all the possible causes of this recent situation for ya.
Ok so first is the Canavan. Yes, it could be progressing.....they are going to do A MRI which will tell us if that's what is going on towards the end of the month when she goes in for her EEG (more about that in a moment).
Absence Seizures.....Yeah Lily maybe having seizures when she is awake. Dr. Brown suggested that may be what is going on. I watched some videos on Youtube of absence seizures and have seen Lily do some of the things in the videos. So she will be going in for a 48 hour EEG at the end of the month. This would be the best case right here. Absence seizures are easily controlled, always out grown. Absence seizures effect leaning.
Learning Disabilities-I have some and so does Lily's brother. Actually in my family there are quite a few of us with them so this is a good possibility. Lily is having a ton of testing done on Tuesday that will be able to tell us if she has one or more. However, the report won't be ready for 3-4 weeks, so the end of the month is the magic time when we find out everything!
Damage from past seizures-Because her seizures start in the temporal lobe and travel to the frontal lobe (the frontal lobe controls a TON of things) this is a possibility.
And a very slim chance that this is being cause by meds side effects....its a possibility but a very small one.
So what are we doing? Well as mentioned above she is going in for testing this Tuesday, then towards the end of the month she is having the 48 hour EEG. Also I asked Dr. Brown to do a complete vitamin blood work up on her as well as testing her for heavy metals which we will do while she is in for her EEG. On a happier note....Lily and her brother have started taking Martial Arts. They both love it! Here is a pic of Lily on her first day!
As always, thank you for reading and sharing!!! Hollie
