Let's start with medications. She began the year on Lyrica, which she has been taking for years, while also taking Onfi, which she had been on for about a year. Neither one seem to be doing anything for seizure control. In fact, Onfi caused incredible drowsiness, drooling, and a lot of sedation with her. While she was on Onfi, we struggled with Mira's head control. It seemed to cause a lot of lethargy with her and she was really out of it - struggling just to keep her head up. Ironically, she still was having a ton of myoclonic seizures while on it. After about 18 months of being on Onfi, we decided to wean her off it back in March and April.
We witnessed a consistent flow of myoclonics throughout the entire summer that we just could not control. Mira also continued to average 3-4 involved tonic-clonic seizures a week, sometimes upwards of 6-10 a week. The myoclonics were averaging 100+ a day. Frankly, they are difficult to track, since she has so many. Recently, we tried increasing her Lyrica and it did not go well. Mira had a couple of really positive days with the increase and we were hoping we were headed in the right direction, but she quickly went back to baseline. She started having even more seizures with the increase.
We did have a neurology appointment a few months back and we discussed our options and a plan with her neurologist, in terms of what we can try. Unfortunately, Mira has few options left to try. We first discussed doing a trial of Leucovorin, in the very rare likelihood that Mira might have a CFD (cerebral folate deficiency). A brief trial with folinic acid (a derivative of folic acid) pretty much ruled this out. She is still taking it now, but it is clear that she does not have a CFD or anything related to MTHFR (methylenetetrahydrofolate reductase deficiency) and if she does, it wouldn't be remedied with Leucovorin. We have discussed MTHFR and CFD possibilities with several of her past neurologists, so we figured it was worth a trial.
Our second option was to increase her current Lyrica dosage and unfortunately, we have considered the increase a failure at this point, as it ironically only seemed to cause more seizure activity. After a few more discussions with her neurologist over the past week, we have decided to abandon Lyrica all together, We feel collectively, that it lost its efficacy long ago and the fewer ineffective medications in her system, the better, She is in the process of weaning right now, which makes us nervous since she has been on it for so long.
While she is weaning the Lyrica, we are trying Vimpat (lacosamide) to help control her seizures. Lacosamide is a sodium-channel inhibitor, which she has tried before, so we are not very optimistic. It is one of the few medications she hasn't tried though. If it proves to be ineffective or worsens her seizures, we aren't sure what to consider. One step at a time.
One of the big issues this year also has to do with Mira's weight. She had lost a considerable amount over the past 9-10 months, enough to drop her from the 90% percentile to the 30% range. While her neurologist wasn't overly concerned, he did recommend a consult with a dietitian. We met with someone in clinic to get Mira on a decent calorie intake and she has already gained back a few pounds over the past month.
Mira has had some positive days, as shown in the video below, but they are few and far between. Most days, she is having so many drop seizures and myoclonics, that it is difficult for her to focus on anything. It's heartbreaking to watch her suffer and there is little left to try and seizures have just taken over her routine as of late.
Mira has always battled irritability. It's a vicious cycle of seizures, irritability, and sedation. She gets irritable from the constant neurological static, then has a big seizure, and is knocked out for hours afterwards. She tries to play with her toy, has countless myoclonics while she is trying to play, then becomes irritable and frustrated because it is nearly impossible for her to focus or enjoy it with all of the interference.
So where are we now? Besides trying to advocate for legalization of medicinal cannabis in the State of Kansas, we are researching anything and everything to try and help Mira, as we have been doing for the past 9 1/2 years. Reading and researching countless articles, studies, and trials, while trying to remain hopeful that something will help her. We are open to suggestions and input, so feel free to email me at firstname.lastname@example.org.