I can identify so much with you. My son does sometimes scream for most of the day. He also doesn't sleep. I have found that sometimes it is GI problems and sometimes it is neurological irritation. We have only been doing this for two years now and it doesn't make me feel very good to know that we will be asking these same questions 13 years from now! Just a thought, does he get Baclofen? I have found that sometimes it helps to give an extra dose of Baclofen together with a pain killer after a friend of a friend who was in a MVA was injured so badly that he is a Quad now, does get intense pain from muscle spasms. Maybe ask your doctor about that?
Jacques get tube fed with a formula that has being working good for the past 3 years. I sometimes think it is mainly neurological irritation that could be the problem. He had a big hip operation about 3 1/2 years ago, and we know that the same hip is dislocated, the ortopedic surgeon said that it can not be painfull, but I do not agree with him as I can see Jacques is touching his leg most of the time. His dr has put hom on pax and valeron drops. I will ask his dr about Baclofen, and see what he says about it. I must say he had one of his better weekends only screemed 3 times.
I also have two kids with cerebral palsy my oldest daughter tatiana is on Baclofen and its a muscle relaxer. She's taking it cause she was always tight and now she is much better I'm not sure if tight muscle hurts I think it does, but you would have to ask your kids doctor.
Have any of you asked your pediatrician for Physical Therapy for your children instead of all the drugs? If muscles are spastic (tightening up because they are not being used) they will shorten and become more painful. Learn what the PT's do for this and begin making a routine around it. Take them to a different orthapedic if you do not agree with diagnosis of the first one for a 2nd opinion. Keep them moving and stretching so that they get some help with the pain and it will reduce.
Both my kids get P.T., O.T., Speech, special ed. teacher, nutritionist. But without her being on Baclofen she wouldn't be able to do as much as she is doing now. Her teacher says she's able to move more and something simple as getting her cloths off and on is much easier. And the Physiatrist was the one who prescribed the baclofen, and my girls orthopedic agreed on it.
I agree with mo25. Without the Baclofen, the PT will be a very difficult exercise indeed.