United Brachial Plexus Network, Inc.

Hi
I have a 1 year old that is 6 months post op from the primary surgery. I have had to go out of state to get the primary surgery done. The only follow up that my child receives is when the surgeon from Texas Children's Hospital comes to visit (every 3-4 months)and with an ot 2 times a month. I was just wondering what other parents are doing for their children. I just don't feel she is getting enough care and I am not sure what direction to head in. Can anyone help?

Hi:
I believe that you are getting enough care for your child. Most parents also travel out of state, some far and some short, to get to their specialist. My daughter sees her doctor about twice a year now. It used to be every couple of months then she had surgery and now she will be 1 year post op in Jan and she only has been back a few times so far. As long as your specialist thinks you are doing enough then I am sure it's fine. There really is nothing besides therapy that most parents do along with going to a specialist. Some people find different kinds of therapy (water, horse back riding, etc) and some just do formal therapy as OT or PT. Keeping up with your follow ups to your specialist is most important with therapy for her. Just by doing that you should feel that you are doing everything you can to help her b/c those two things are most important. So I think you are doing fine. Good luck to you.

Thank you for your reply. There is so much information out there but it is so hard to get through it and know that you are making the right decisions as far as care for your child and the injury. I always wonder if there is more that I should be doing besides "just waiting to see" It is a hard approach to handle. Thanks for your help!

I have had the same concerns. It was so scary after surgery. I was constantly on these boards asking people questions, calling and e-mailing the Drs. Most everyone has to go out of state for care of this injury. We went to TCH and we live in NC. We see the Dr. about every 4 months for follow-up visits. Have to travel for that too, but luckily in our state. Ask any questions, were all here to support eachother, please dont feel you are alone.