AFOs - What are they?
We have all seen UFOs - Unidentified Foot Objects - on children. What are they? What do they do? How can I get a pair?
Ben wears AFOs - ankle foot orthotics - everyday. They give him stability because his calves, feet and ankles are weak. He has been wearing some type of brace since he was about 2 years old. It gives him the support he needs to walk with assistance. He does not seem to mind them and he makes it relatively easy for us to get them on and off.
If they are made correctly and put on the right way, I do not think they cause him any discomfort. Saying that, I have seen him come home from school and camp with upside-down, backwards SMOs (supramalleolar orthosis) - never heard him complain then either.
Lessons Learned
Through insurance, we are able to get new AFOs every 6 months. Ben also has SMOs - and they too may be replaced every 6 months. I share this knowledge because I just learned it. I thought I had to alternate between the two and this meant that Ben may have outgrown the SMOs or AFOs before it was time to get new ones. Now I know and will take full advantage of the every 6 month rule for both sets of braces. Check to see how often you can get new equipment. It could make a big difference in your child's comfort and progress.
Find an Orthotist you Trust
We changed offices because our orthotist, Steve moved and Ben loves Steve, so we follow him wherever he goes. I love Steve because we have never had to have the AFOs remade. He does the measurements right the first time. He is also understanding that I have other children that may run around the office while he makes adjustments on Ben.
Casting & Designing
In order to make the braces, a casting of each foot is made. I forgot to photograph the casting, but I will next time. The photos you are seeing are from the fitting, about a month after casting. At this orthotics office, they take the casting and then send it to another location for the technicians to design and produce the AFOs. Physical therapists and the orthotist work together to decide what is best for the patient. There are many options for these types of braces and depending on a child's need, a template for a regular AFO may be used or something can be specifically designed for them.
Logan's job is to choose the color and design of the AFO material used. Since he was not at the casting, I acted on his behalf and chose the blue camo. When these came in, he scoffed at my choice, but I really think he would have chosen this style.
The end of the AFO by Ben's toes is made longer so that it can be trimmed by the orthotist.
Ben gets several new pairs of socks and one pair of shoes (not pictured) too.
So far we are happy with these braces. No red marks, blisters or other problems have shown up after a week of wearing the AFOs. If there were issues, the orthotist would work with us and the physical therapist to remake ones that fit without any problems.
I just found your blog through links from "Fighting Monsters" blog, and I can't quite find my breath. For the first time in 6 years, I am reading about/hearing stories from another family who has gone through SO MUCH of what our family has experienced. Our son is 6, and is similar to Ben in so many ways. An added kicker is that we almost named him Bennett (we ended up going with Sawyer - but still love the name Bennett/Ben). Sawyer does have an additional genetic diagnosis - I would love to correspond with you, if you had the time - cattayloris@mac.com . Thank you for this beautiful story.
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