The biggest change as of late has been Mira's transition from grade school to junior high. It was an emotional week for us, as Mira finished her last day at school this past Thursday at OPC. She had been at the same school for the past 7 years (K through 6th) and I think there are claw marks on the doors where they had to pry us away from the school. Mira has an enormous amount of support from her paras, the school, the principal, therapists, the cafeteria staff, and of course her teacher, who has been running the classroom since Mira started kindergarten there. We had to say goodbye to the only other person who knows Mira as well as we do. I am sure our paths will continue to cross, as the special needs community in the school district is small, yet the overall transition is to a new environment and a new support system is always difficult.
One of the last changes has been completely my fault. We have had Mira on a steady dose of pyridoxine (vitamin B6) for some time now and on occasion, I question my decision to keep her on this high dosage, as we continue through this journey with her. I read about the risk peripheral neuropathy, combined with the fact that Mira is non-communicative. These questions typically surface after Mira has a bad week (or weeks), which is exactly what transpired at the beginning of the month, which I will get to in a bit. Questioning and evaluating is good I suppose from time to time, which is what I try to do when she is having a bad few weeks, so I questioned whether the high dosage she is on is:
a. truly effective in seizure control or reduction
b. potentially causing harm (i.e peripheral neuropathy or something other side effect)
c. making her uncomfortable
d. actually increasing her seizure activity
e. causing imbalances in some way in the body
f. all of the above
After Mira had a few really rough weeks at the end of June/early July, where she had multiple days of multiple involved and repetitive tonic-clonic seizures, forcing us to administer Diastat twice in 3 days, these questions all came up again, causing me to evaluate Mira's current daily medication and vitamin intake. Thus, I reduced her pyridoxine dosage, thinking it might be the cause of something - an increase in seizure activity, dystonia, neuropathy, or the root of what had been disrupting her flow the last few weeks. Keep in mind that she is still currently taking Lyrica, which she has been on for years, as well as Fluoxetine, both of which serve their respective functions - partial seizure control and combating irritability to a degree. They both seem to be only fairly effective. Neither one completely stops her seizures or entirely stops the fussiness, but they at least help, which is the best we can hope for after trying dozens of ineffective meds, therapies, and treatments prior to settling on this regimen. These dosages we have not altered for some time, thus the only variable that I decided to change was her B6.
Well, reducing her pyridoxine has been an absolute disaster. After reducing it for a few days, the irritability spiked and today has reached an unprecedented level of wailing and screaming in her bed, for hours. Nothing is keeping her happy and there is nothing we can do to address it, other than to wait it out and increase her dosage back to where she was. I saw it coming yesterday and immediately boosted her dosage back up to where it was a week ago.
I seem to never learn the lesson that all of this is such an incredibly delicate balance and shifting one single domino causes the entire maze to seemingly collapse. We have been down this path before, attempting to adjust pyridoxine, Lyrica, and a host of other meds on the pharmaceutical roller coaster (at different times) and it never ends well. Insanity is doing the same thing repeatedly and expecting a different outcome - a lesson I truly need to grasp. Less pyridoxine = more irritability. That is the outcome. It's not difficult to understand. No one in the medical profession will be able to convince me otherwise that Mira has some level of dependence and/or deficiency with pyridoxine and this latest dosage trial reinforces that theory, once again.
As the wailing continues, the questioning will no doubt continue, but for now, we are moving back to where she was on the B6 and crossing our fingers that some sense of normalcy will return soon.
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