Pyridoxine Update

Mira is almost 3 months into her trial with pyridoxine and my optimism level has plummeted to nearly zero. Over the past few weeks, the myoclonics have consistently returned and her pattern of tonic-conics has also settled back in. I was feeling really positive about all of it about the middle of July, which was around the anticipated mid-point of my theory of her having some level of pyridoxine deficiency/dependency (PD), would start to take effect. Mira was becoming increasingly vocal, her seizures, at the time, seemed to be diminishing (even having a stretch of seizure-free days) and for a while, we weren't seeing any morning myoclonics. For that matter, we weren't seeing ANY myoclonics, all day long. As you may recall in one of my earlier posts, I had a theory, based on Mira's history of seizure freedom, that she may be PD.

She has been holding steady at around 25mg/kg, which again, is around a standard trial dosage for PD. I had tried raising it this past week, but it severely affected Mira's sleep patterns. It made her miserable during the day and kept her up all evening. Dropping the dosage back to where she was, seemed to be a good balance about a month ago. Now, I'm not optimistic about any of it. We are going to continue to move forward, indefinitely, but with the rising realization that this was yet another therapy that will ultimately, do nothing for her seizures.

Until you have a child with such a catastrophic syndrome or disease, you will most likely never understand the yearning and desire to ease your child's suffering. The relentless onslaught of debilitating seizures and stagnant development for the past nearly 10 years, has truly been devastating for Mira, making life challenging for her of course and for our entire family. It has taken me years to try and work toward a point of acceptance, but it is still, after continuing on this journey, very difficult for me to do. Accepting this mantra of 'it is what it is' or 'it could be worse' is something that I still cannot fully digest, but need to embrace, in order for me to better function as a parent to my other 2 kids, my wife, and my career. Acceptance of Mira's condition, without a definitive cause and to not have access to an effective therapy to ease her suffering, is something I am truly trying to accept. It just takes time.