I am taking a serious moment to post about a controversial surgery we elected for Regan to have. Regan is 12 now, but when she was six yrs old I read a Time magazine article about a doctor at St. Louis Children's Hospital who had revolutionized a procedure to help kids with cerebral palsy. To put it in as simple terms as possible, if your CP child has limbs that are very tight because their brain is sending those limbs mixed messages, this surgery takes away much of that tightness (spasticity).
In Regan's case, she was walking in her walker but her legs muscles were so tight that she wanted to walk on her toes and hunch over to compensate. She was getting Botox injections in her legs and they helped, but my problem was I knew that your body can build up resistance to drugs, and then require more of it to be effective. When it is no longer effective and your muscles are too tight, then surgery to cut and lengthen those muscles is the only option. These surgeries lead to others until the muscles can be cut and stretched no further, and a wheelchair is then the only option. When we looked at our long term goals for Regan this is not how we wanted her functioning medically.
With Selective Dorsal Rhizotomy the surgeon goes directly into the spinal cord (very scary I know) and tests electrically each nerve to see if the brain is sending it the correct message. If the nerve is getting the wrong message, than it is severed and cauterized. It is a lengthy, painful, and serious operation and recovery time is extensive. It is not something we considered lightly at all. The outcome though is like permanent Botox. The muscles work better and can be retrained to now support and function with the body. Future surgeries of cutting into muscles are virtually eliminated, and with hard work the wheelchair option is pushed far away. I did all my research, got second opinions and testimonials it is very difficult to make these kinds of life decisions for your child. We decided it was the best option for us. I do want to go on record to say that her doctors at Scottish Rites Children's Hospital were absolutely against it. I had to make this decision based on what I thought was right for her. No doctor will ever understand and know your child like you do.
We were scheduled right after Memorial Day Weekend for surgery and we flew to St. Louis and hoped for the best. I could go on for pages about our time at St. Louis Children's Hospital, and probably will in a future post, but here I am going to focus on the end result. Regan walks upright and still in a walker (again another post completely), but she can run and jump in her walker and has so much better balance.
One story that brought me to tears, is that her first grade teacher when school started the following year noted these changes. Before during the Pledge of Allegiance Regan sat in her chair, after surgery she stood and was able to hold onto her desk, because her balance and weight bearing had improved so much. She was able to write better and use her fine motor skills in fact she no longer wanted to sit out of anything, and was no longer worn out after short distances. Her strength, stamina, balance, and coordination improved dramatically. We are now six years later, and have needed no further surgeries, no long term wheelchair use in sight. It was a decision I would do over and over again with no hesitation. Feel free to contact me if any parent has questions regarding this procedure, and I would be happy to help or share our information.
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