Beth playing her cello at our local mall in December with her Advanced Chamber Orchestra group
Note: If you're not familiar with my daughter's story of living with epilepsy, please start reading here - Beth's Epilepsy Story - or click on the button on the right.
Beth has allowed me to give some updates throughout the year so this is the first of our 2015 updates. It's also helpful for me to have it written out here to help keep track of what's happening.
She continues to have seizures about once/month and migraines a couple of times every month. For the past few months, she's had one very small tonic-clonic seizure once/month and it seems to be preceded by a week of just not feeling like herself and perhaps a migraine or two.
The good news is that we seem to be able to predict them a bit more because she starts to get daily headaches and has to stay home and stay in bed. For the past few months, she's had a seizure by day 4 or 5 of this and then feels better for a few weeks. She's also had a very clear aura before them so she immediately sits down and has been able to stay safe that way.
The bad news is that we can't seem to find a trigger or pattern outside of stress and fatigue. They are very definite triggers and we may never find any others but we're tracking everything in case we do.
We've decided to lighten her schedule a bit to help fight the fatigue issues. She's been in three different orchestras and/or orchestra clubs and she's going to pull out of one of them. She's also going to pull out of National Junior Honor Society. If this was high school, we'd try to find a way to keep them in her schedule but she's still only in 8th grade and none of her activities or grades will matter to a college transcript so we're not going to stress about it. Her health has to come first.
The stress is a harder thing to combat. She's a natural worrier and add to that the constant anxiety that comes with epilepsy and it's just hard to control. Plus, she's otherwise a normal 14-year-old girl and the social stresses that come with this age aren't easy.
How she manages to deal with it all astounds me. And usually with a smile! But I won't lie - she's not happy right now at all. Going to back to school yesterday was very rough and I have a feeling that she'll have a rough time all week, adjusting to a different schedule again and not being able to relax when she needs to.
But three good weeks out of four is much, much better than much of last year and we'll keep pushing for every more good days. :)