Update on effect of Lioresal, general stuff and Un-hygiene day

By | November 9, 2013

There seems to be no dramatic physical change in Nisarga since starting him on Lioresal Syrup (Baclofen) for his spasticity apart from slightly less stiffness in his legs. It is so slight, that it could also be my desire to see a change more than actual change.

However, there are changes on other fronts. His food intake has dropped. Just as he was eating marvelously, we are back to finding ways to tempt him to eat. This worries me, as this kid seems to take his own time putting on weight, while one day of ill health can reverse any gain and make him look all bones. But I think it is too early to worry. I have noticed it at once, and am on top of this. I can tempt him to eat more. I’ve done it before successfully. Also noticing that immediately after the Lioresal syrup dose, he refuses nearly all food and I’m guessing from his sometimes mouth-open-tongue-out expression that he may be getting slight nausea from it. So today I experimented with feeding him full first before the medicine and giving him a couple of hours before facing a meal next. That seems to have worked (once). Will update.

But here is the real kicker of a change.

Whether visible or not, the kid seems to have a spurt in energy (which shouldn’t make sense if he’s eating less and maybe suffering nausea). I am guessing here that he is experiencing less rigidity, though the visible effect is not too big and simply has enegy left over that would normally go into controlling his body for basic functioning against the spasticity. That is a wild guess, because nothing else would explain his sudden getting into all kinds of things.

For example, today seems to be un-hygiene day. I am imagining this kid having a mental list of icky things to do that he’s ticking off. Within a few hours of waking, he’d managed to get into the balcony off the bedroom (read dusty storeroom) five minutes after his bath. And yeah, he creeps on the floor. He can’t crawl yet. Back to the bath – the leftover water was still warm.

As I made him breakfast, he went to the front door and pushed around a pair of slippers and was tapping one all over his body. Then he upended a garbage can. As I speak, he’s managed to pull out all kinds of electronics mess and wires we had put into a large bag to sort later. I guess I’ll sort it today. He’s done half the work. His face is streaked with dirt and he’s grinning like a demon. I’m looking at a phone banged into three pieces and swallowing a bit before returning the grin. “Look! it became three pieces” this is an old favorite activity.

It isn’t that I keep things where he’ll reach them, but clearly the kind of keeping an eye on things I am used to now needs an upgrade.

So yeah, nothing concrete I can put a finger on, but there are enough subtle changes that he’s catching me by surprise.

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