Our five year old will be having her first surgery this upcoming January. We weren't expecting it until much later. In fact the last doctor she was seeing took a "wait and see" approach and didn't recommend it until she was ten years old. We just met with a new orthopedic surgeon who is familiar with her condition. He recommended the super hip/knee in January followed by a lengthening at about age six.
We are are trying to adjust and prepare as much as possible. But little information is out there, and we have only a few weeks before the surgery. I have read several posts on this site and found them very helpful. I'm wondering if anyone has had a child undergo it at this age. How did you handle toileting? Is it crazy to plan on her attending school? How about clothes? Do you recommend a wheelchair? or walker? or anything else that helped? Several people mentioned bean bags, is that because couches are not comfortable? What about when were at home, should we plan for her to be mobile or sitting most of the time? What about car seats, does she need a special one, or will her booster do fine?
Any other practical information would be helpful. I'm having a hard time picturing what life will be like day to day. Thanks in advance,
Martha
next steps
Hey there Martha,
I'm an older PFFD guy, and lengthening wasn't really an option when I was a kid. I had an amputation and some other fun stuff done. I can't offer specifics on the wheelchair/walker debate, but hopefully I can offer you some peace of mind.
For things like toileting, sitting, walking etc. you are going to want to take your cues from her. She will let you know when she needs help, and you will probably often find her figuring things out. When I was small I wore a huge metal extension brace and had to find my own way to do a lot of things. You'll be amazed at what kids can figure out. Be prepared to be frightened once in a while, if I remember right, I often heard "What are you doing up there?!" As for planning, even without PFFD my two kids are impossible to plan for. Some days will be really active and some won't. The best you can do is probably prepare a little for both, then adjust as you go forward. Absolutely plan on schooling. Most schools have dealt with kids that are differently abled and if you get with them early and often, I'm sure that you'll be able to work things out.
Things like car seats, clothes and such you'll have to look at once you know what the hardware is going to be like. The doctor my also have suggestions for what will work best.
Day to day life will be interesting. You will see other kids doing things and then you'll notice how yours finds a way to do it too. It will most likely be amazing. I have not yet met anyone with PFFD that said they couldn't figure out how to do enough to lead happy lives. Good luck to you, and I hope that some others here can fill in more of the specifics for you.
Nick
Thank you
Thank you for your advice and sharing from your own experience. I am continually amazed by my daughter and I'm sure she'll adjust fine, much easier than I might. Thanks for that reminder.
Timely Post
Hi, Martha.
I have a five-year old that is looking at the same procedure. We are expecting both super knee and hip, as well as the lengthening later this year. We've been monitoring the CFD since birth, so it was somewhat of a surprise when we heard that "now" is the time. Our prior surgeon had also gone with "wait and see," but the shoe lift has become cumbersome and he will be between schools based on timing.
Our surgeon has worked with Dr. Paley and has directed us to his writings and advice. But, it'd be invaluable to hear from someone that has been through this, especially with a child this age. We're looking at a minimum of a month after the super knee/hip and then a few months with the external device. (4 cm) Have you already undergone the procedure(s)? Can you share your experience and provide any insight? We're just starting down this path and could really use the help.
Thanks!