We had a shockingly efficient appointment at the neurologist's office yesterday. I think we were in and out in an hour and a half and most of that time was with the doctor (henceforth referred to as Doctor Awesome). We didn't even have to eat the snacks I always pack to get us through those afternoons.
We shared how pleased we have been with the prednisone and how many positive changes we have seen in Collin while on it: his wakefulness, alertness, interaction, eye focusing, neck control, smiling, and vocalizing. And of course the fact that his spasms have been minimal. And then Doctor Awesome explained to us that we can't keep Collin on prednisone long term and it's almost time to start weaning him off.
'I'm sorry, what?' you might ask. 'Something is working and we have to stop it?' you may ask. 'Why did we ever start it in the first place?' you might ask. Excellent questions, my friends. I asked them all myself. I guess the answer is that there is a small chance that a course of prednisone could permanently solve the spasm issue. And when I say small, I mean minute in the extreme. But apparently it was worth a try. So, we'll start the wean next week and it will take 3 weeks to complete. We'll watch carefully during the wean (like we ever don't watch carefully) and if the spasms start to pick up again, we'll try one more round of B6. If that doesn't work, it's on to Vigabatrin - the drug from Canada that can cause retinal damage.
As I've explained before, Collin's neurologist is many, many kinds of awesome; one of them is that he is a man of action. Collin has had a white, furry-looking tongue for almost two months now and I've been to the pediatrician TWICE to see if it was thrush, which would have explained why he didn't want to eat anything by mouth anymore, since thrush makes your tongue hurt. Both times, the doctors declined to treat him for thrush because he didn't have spots on his cheeks as well as his tongue and because they were hesitant to add another drug to his regimen. I can appreciate the desire to minimize unnecessary medicines, but let's look at the big picture here, people. This kid is on some seriously heavy-duty drugs - is a yeast killer really going to make that much of a difference? Not to mention the fact that he WILL NOT EAT BY MOUTH. Problematic, I would say. Worth a try of a relatively benign drug, I would say. Evidently, Doctor Awesome agreed, because he took about two looks at Collin's tongue, heard that he wasn't eating, said 'he should be treated for thrush,' wrote a prescription, and - bam - we were treating him within 3 hours. It hasn't even been 48 hours yet and already his tongue is less white, so here's hoping.
On schedule for this week: interview pediatricians.