Next month is Epilepsy Awareness month, but every month I battle my own awareness of this disorder. For those of us who live daily with Epilepsy, we know that the awareness it exists never goes away. Seizures appear with no warning on the days when we least expect it. It does not judge or discriminate. It attacks unexpectedly, even the littlest of us.
My youngest daughter had a neurology check-up earlier this week. Her doctor said she is doing very well. Her seizures have been controlled for the last year with only mild setbacks. Her speech and vocabulary have increased by giant leaps. She is thriving at age 3.
Her medicine, Carbitrol SR, is still making her cranky after taking it. Her appetite has decreased. Her ADHD and OCD is off the charts. All are common side-effects of her medication and I hate seeing my baby suffer from these things.
With this check-up, I gave our neuro a choice to give us something right away if she had a suggestion to try or to take 6 months to find us something else to try to give my daughter back her full life without side-effects. I’ve lived with this disorder, raised a daughter with this disorder and now I’m raising another daughter with it too. I know the risks involved in changing medications and the risks involved in not taking medication. I was shocked surprised that the neuro was more than willing to switch the baby’s medicine right away and I was estatic thrilled that she was in agreement.
So today, my little bug started a new medication: Depakote. This medicine will hopefully control her seizures and help her ADHD and mood issues. I am praying that it works without any complication, that it gives me my precious girl without the crankiness the other medicines have caused, without the sleepiness and without suddenly stopping controling the seizures as the other medicines have been known to do.
Medicating Epilepsy is like tossing dice. You never know what the outcome will be. It’s a bet, a gamble, a try. There is no sure “cure”, no right thing to do. Being the parent of a child with this disorder is awful. Knowing there is nothing you can personally do to cure this or to help your child through this, is the worst feeling I know. It is a heavy cross to bear but at the same time it IS bearable.
I am blessed and I love all three of the beautiful children I have carried with all of my heart. I do my very best by them. I pray daily for their happiness and well-being, for this disorder to go away. God chose us to carry this and God has blessed us daily in this. I know we are lucky for this not to be worse than it is and I am thankful we are so blessed.
