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View Full Version : Child w/ CP, Baclofen Pump, Post SDR



Susan Smith
12-10-2004, 11:41 AM
Hi! I was referred to this forum as a resource for some questions I have. My son Zach (15) is severely physically impaired. He is diagnosed with severe spastic cerebral palsy. He had a Selective Dorsal Rhizotomy in 96. The Neurologist opened the spine in the lumbar area and cut selected sensory nerves to reduce the spasticity. Then in 97 he had a g-tube placed to facilitate weight gain. In 2000 he had a Baclofen Pump placed. This pump is in his lower right abdomen with a catheter that feeds through his spinal cord. This delivers medicine that reduces spasticity. Due to have the pump and g-tube he was unable to wear a brace for his progressive scoliosis and now faces rod placement.

His scoliosis is now at 66 degrees and the doctors want to place rods that will run from his pelvis to his upper shoulder blades. He will have anchors into the pelvis from the rod.

Has anyone else had a child with these type of challenges need rod placement and if so would you share your experience, advice, etc. with me?

I understand that weight loss frequently accompanies this surgery?

Thank you so much!
Susan Mahserjian-Smith

Carmell
12-10-2004, 02:17 PM
Hi Susan,

I don't have the same exact experience you are looking for, but, I have known several CP patients who have had surgery for scoliosis. I also know many children with g-tubes, and even one personally with a Baclofen Pump! Does that count? LOL

My only advice is to make sure your ortho has enough experience with kids like Zach. See if you can get the names of a couple of his patients so you can speak with the parents. You will definitely want to know what you are getting into. You will need to know the long term implications, if any, etc.

My son has multiple medical issues, but not CP. He is fully mobile and functional. He is a Titanium Rib Project patient, which means he has two vertical rods in his back - one attached to the lower spine and an upper rib and another vertical rod attached at the top and bottm of the posterior chest, keeping his lung fully expanded. He has surgery every 6 months to expand the rods as he continues to grow (he's 9yrs old now). I would be asking the doc about the placement of the rods he's recommending and making sure the type of surgery is the right one for Zach.

Would you mind sharing who your ortho is? Or if not publically, please email me at boulderfam@hotmail.com - I'd like to know if the doc you see is one I've heard other parents mention.

Take care and let us know how things go for Zach, and you.

billz45
12-14-2004, 10:25 PM
OMG! I am SO sorry 4 this...im a teen myself and i really dont know how you can deal with ALL these issues

god bless u