i have been struggling with conflicting thoughts lately regarding the seizure medications that mikisa is on. she’s on 3 different [very strong] anti epileptic drugs or AEDs. last week, after a routine 3-month audiogram, we were informed that she has lost 10 decibels on her high frequency score for her right ear. this is not good. at all. we are going in again next week to confirm the results with another test, but it has me worried. her audiologist asked if we have changed any medications and i casually told her that we are increasing one medication in the hopes of getting rid of another [that has particularly bad behavioral side effects]. as it turns out, this new medication that was supposed to be our long term solution to the myriad of problems we’re having can, in very rare cases, cause hearing loss and deafness. say what?????
so i left an angry message with our neurologist, telling him i couldn’t believe he would forget to mention this when my daughter already has a significant hearing impairment. his nurse called me back and told me that the neuro has never heard of this side effect and we should continue to increase the dosage at two week intervals until january, per our titration schedule. i was livid. at the cost of my child’s hearing? really?? she also casually mentioned that this new medication could make her eye muscles weaker and we should watch her closely for signs of vision difficulties. oh.my.goodness.
now, we’re left in this place of uncertainty…not fully trusting the results of the hearing test and not trusting our neurologist to be thorough with his disclosure of the potential side effects of each medication. we go back next week for another audiogram and after that, ultimately the decision will be ours as to whose advice we follow. we also have an appointment with an opthamologist who specializes in cortical vision impairment [a form of visual impairment that is caused by something going on in the brain rather than an eye problem]. hopefully we will get a clearer picture of what’s going on with her vision. her left eye seems to wander to the side a lot, and it is another area of concern. i am learning that i have to research and learn all i can because you can’t just blindly trust what the “experts” say. i am learning that sometimes, when it comes down to it, i am my child’s neurologist…making decisions that are way out of my league. since every specialist has their own opinion on what’s best, it really is often left up to the parents to decide which course of action to take. and that can be really hard.
i used to think that taking mikisa off all medications would be the best solution…but after fully researching the devastating effects of untreated ESES, i want to find the best treatment as soon as possible for maximum seizure control to prevent regression and further brain damage. but it’s so frustrating when you don’t know if the medications are doing more harm than good. it’s a constant game of trial and error with far too much guesswork. there are no quick fixes either. please join us in praying for wisdom as we advocate for the best treatment plan for our girl. also, please pray for her hearing and her vision…that God would protect her ears and eyes so that she can continue to experience the richness of life with all her senses in tact.
*photo credit: www.mandiejoy.com