It has been a month now, Nisarga is super clingy. We had gone to stay in Virar when my mother-in-law fell ill, and ever since then, he simply won’t let me out of his sight.
His medication also doesn’t seem to be working any miracles, and the dystonia is more pronounced. He has increasing trouble falling asleep. His body just won’t quieten. Arching, twisting, jerking… well… not as bad as that sounds, but he is constantly moving. All. The. Time. Day and night and even in light sleep he can move enough to wake himself up.
This also means that he is spending tremendous amounts of energy, and no matter how much he eats, he isn’t putting on weight. I feed him the regular chapati sabji and stuff whatever we eat, and keep giving him something to nibble as often as he wants. High calorie somethings.
I used to feed him infant food after his meals, so that he was solid full and not just tired of chewing. Now he doesn’t want that anymore. He likes the “real” food more. While that is good, now I’m wondering what I can do to make sure he doesn’t lose weight…
But my real concern is the dystonia. Just had a marathon three hour session trying to get him to sleep. He was sleepy – ready to sleep for three hours, but just as he would fall asleep, he’d jerk, or twist, or arch his back, and we were right back where we started.
The new medication also seems to have added to his constipation, so that becomes yet another reason he won’t sleep.
Here is a video of him generally doing his thing. He loves to be in this passage for some reason. The way he uses, or rather doesn’t use his limbs as far as possible worries me. With the Feldenkrais, he has learned to use them some, but needs reminded, without which, this is what he does.
Frankly, I don’t think the Bexol is working. Let us see what his neurologist says.
In other news, he is becoming addicted to his medication, which I think is a good thing. We never miss or delay a dose. Seeing as how he is supposed to take it long term, I don’t see this as bad at all. Breaks my heart to see the little guy cranky and stiff and wanting medicine – of all things. After the first few days, he has understood it helps him so much, that I can put the tablets in his mouth, and he simply chews and eats them
Reality is coming home to roost. Nisarga hasn’t made any significant progress, his dystonia is getting more troublesome, and I am increasingly exhausted.
The only bright spot is somehow, I found the energy to begin doing the Feldenkrais sessions with him again for the last two days, and they are still helping him. I think I need to quit worrying about how much I don’t know, and focus on learning and doing all I can.