~I would like to pre-empt this article by clearly stating that I am not giving medical advice. I am writing my own opinions. My opinions have been formed over the course of many years of talking with neurologists, listening to lectures, reading a multitude of articles, and of witnessing the effects and side effects of medications and treatments my daughter has been exposed to. It is my advice, however, to discuss any and all adjustments of epilepsy treatments thoroughly with the prescribing neurologist, epitileptologist, and/or family care provider. It is my hope that my posts regarding treatments will not alarm you, but that they will inform you, and possibly prompt you to think of questions for your doctor that you might not have thought of before.
As my blog grows and continues, I will discuss in more depth what I believe to be the benefits and the disadvantages of all of the medications and treatments Bella has used. Today, I would like to simply list everything she has ever taken. I am happy to answer any questions about any of the treatments at any time.
The length of time and how well each treatment worked vary, and some date back so many years that I may not have as accurate of information as I would like to share, but I will be very upfront if my memory is weak regarding a particular medication.
Here is the list, in no particular order:
Depakote (Depakene, valproic acid)
Quedexy (extended release Topomax/topiramate)
Aptiom (extended release Trileptal/eslicarbazepine)
Midazolam (nasal versed for breakthrough seizures)
Vagal Nerve Stimulator (VNS)
Bella currently takes Keppra, Quedexy, Aptiom, phenobarbital, and she has the VNS. She also has clonazepam prescribed for episodes of anxiety, as well as midazolam for emergencies, or breakthrough seizures.
As you can see, over the last 20 years, we have touched on a little bit of everything. These all have their benefits, and seizure control with the least amount of side effects is our number one goal. Sometimes it is difficult to navigate through it all. I have appreciated hearing other’s experiences with the same treatments, even though the side effects do not always present to each patient. Talking about the possible side effects, and understanding what to watch for is so important. It is also important to keep a balance of what is definitely a side effect, what is possibly a side effect, and what is probably not a side effect. Keeping a log, and bringing notes to the neurology appointment is most likely the best way to be sure all of your concerns are addressed by the doctor.