firehorse

My (almost) 6 year old nephew has mixed tone CP with spastic quadrants (all four limbs affected). His hamstrings and adductors (inner thigh muscles) are the most spastic, and he has a hard time extending his arms over his head. He can stand and walk for short times/distances with a walker, bunny hops/crawls at home, and sits in a regular chair at kindergarten. He has affected speech and problems chewing and swallowing so he needs help with feeding (and it takes a long time) and he only weighs 41 lbs because he burns so many calories/is so inefficient getting calories.

He had a round of botox injections from his hamstrings, but frankly, we didn't notice much difference. Now his physiatrist is recommending baclofen. I assume it's the oral med, because he's not tight enough to require the pump IMO. He gets stretched daily (besides OT/PT at school) and you can straighten his legs to around 45 degrees when he's on his back, which ain't bad for CP.

His trunk is pretty floppy and his overall tone is low, so I'm wondering if any of you have/know someone with low tone on baclofen. Seems to me that the benefits to his spastic muscles would be cancelled out by the 'increase' in his low tone, if you get my meaning.

He is on AEDs for epilepsy too, I'm blanking on the drug, but he takes 4 doses a day plus L-carnitine, so it's one more drug he would have to take.

Sorry for all the detail, but you never know what is relevant. Thanks.