Quote:
Originally Posted by WilliamInnerCircle
Hamas,
Is the baclofen given by indwelling pump? How severe is the CP aspect? I love watching kids make those little breakthroughs. You're courageous. And so is your wife.
All the best,
Will
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It is not an intrathecal pump. I would be very hesitant to use one, as their malfunctions can have devastating consequences. We give her an oral suspension three times per day.
As far as the CP goes, the best answer is that I'm not certain yet. The tone in her trunk is much improved. Her tightest muscles, by far, are her adductors. She still has excellent range in them; in fact, if I stretch her legs she can do the splits horizontally. However, she only has about ten degrees of extension before tone in her adductors kick in.
I think she has a touch of spasticity in her left arm, but she still uses it to eat, hold cups, play with toys, and manipulate objects, but there is a definite preference.
I don't know if you're familiar with Gross Motor Classification or not. I asked our PT where she'd fall on the range. At her age it's hard to tell, but her goal is for her to walk with minimal assistance, perhaps just orthotics in her shoes.
Long term, I wouldn't be opposed to considering a dorsal rhizotomy, but that will be part of a larger cost benefit analysis.
We've talked about potential Botox injections for her adductors, but haven't reached consensus on that either.