We had our standing neurology appointment today, which we have had on the books for almost 6 months. The clinic is so busy, that we typically have to set our future appointments 4-5 months out, right when the schedule officially opens. Trying to predict whether or not you might have a conflict that far in advance is pretty much impossible. You just have to make sure you don't cancel, otherwise, you are back in the queue, which means you probably have another 4-6 month wait to get back in. Did I mention the neurology clinic is busy?
We have been going to the neurology clinic for over 10 years now, seeing 4-5 different neurologists - we have been seeing our current neurologist for the past 4 years and we are very comfortable with him. He is direct, respectful, and knowledgeable. I have learned not to have any expectations with what we will discuss, as we often go sideways in the conversation. For a few years, it seemed each appointment ended up completely different than I imagined it would go, thus I just quit trying to speculate. Sarah and I had a few things we wanted to address at this appointment, including the efficacy (better yet, non-efficacy) of Vimpat, the potential of putting Mira on a SSRI (to potentially manage her irritability), getting into ophthalmology (since Mira has not had a vision screen in years), and to discuss the idea of a gluten-free diet.
Taking her off of Vimpat is a simple concept. We don't feel like it is doing anything for her seizures and the less medication she is on, the better. We dare not even consider taking her off of Lyrica - we have learned our lesson the hard way, twice. Both times it was a disaster. Weaning Vimpat will hopefully go smoothly. She will taper down over the next month and should her situation worsen, we will do the exact opposite and try moving her up. She is on a fairly low dosage so there is the potential to move up on it, yet based on the fact that she has failed so many trials, with a plethora of different medications (and dosages), with varied mechanisms of action, the chance of a Vimpat increase actually helping, is extremely slim. Her neurologist reinforced this to us and we understand the percentages. All pharmaceuticals are a gamble either way.
We also discussed putting Mira on a SSRI, which is a Selective Serotonin Reuptake Inhibitor, to try and make a dent in Mira's ongoing irritability. We have always battled her mood and instability, so trying a different approach is worth a shot. Her neurologist was very open to the idea and has a host of patients that use SSRIs to help, primarily with anxiety and not so much epilepsy. We collectively decided we are going to ease her onto a low dosage of fluoxetine. Her neurologist was able to witness her crankiness during the appointment, when Mira cried for the last 15 minutes, while we tried to carry on a conversation over her wailing and tears.
The final issue we discussed was the idea of putting Mira on a gluten-free diet. The response from her neurologist was that there is no evidence whatsoever that a GF diet helps with seizure control. He sees a lot of patients that are either currently trying it or have tried it in the past, but nearly all them have had limited success. Most try it for 6-12 months, seeing positive results after a few months, but then the efficacy of the diet tends to fade after awhile. Despite the lack of results and studies done on gluten-free diets and epilepsy, he said there is no harm in trying it. As I noted in my last post, Mira is basically on a GF diet, minus the protein powders. I was able to find a plant-based powder that is gluten-free, soy-free, chemical-free, and contains no artificial ingredients, which you would think would taste awful, but it actually tastes great. I mixed a scoop with a glass of rice milk and I thought it had an unexpected sweetness to it. The smell is very earthy, but the taste is fairly sweet, not grassy. Mira chugged three bottles of it yesterday and doesn't seem to disagree with the taste.
Mira is having a pretty typical week - same amount of seizures, same irritability. With all of the changes in medications that are coming up, we will be keeping a close eye on her. All the kids have a 4-day weekend, with parent-teacher conferences the rest of the week.