In the last post I explained why AFO are necessary and why Kyra needs to wear them. If you missed it, here's a link WHY AFO's Now talking about different types of AFO. The most common ones are Dafo, Hinged, and Smo. I have tried all 3 of these with the two major leading companies. I am in no way suggesting that one particular type of brace is better than another. I am simply explaining my experience with these braces and what worked for us.
Brace #1 Kyra had Purple colored Dafo as her first brace due to foot drop caused by spasticity. She got this brace when she dint even know how to walk. It worked beautifully and Kyra didn't tip toe a lot while she learned to walk.
Kyra grew and time for new brace, this time we could see knee hyper extention as well. The main point in this appointment was that Kyra had ankle range motion, which means she was able to keep her foot in neutral position with help and no pain, (If she could not do that Botox was in our future option) and they wanted me to consider a brace which will allow her to use that range of motion.
That's when we were introduced with Hinged AFO. While this AFO had the hinge allowing Kyra to freely use her ankle motion, she just couldnt walk and was turning her foot in a lot. Along came right foot SMO. It made things worse. She just couldn't walk. We were frustrated, she was very little, we thought the brace was heavy due to metal (it made sense, and also it was really heavy) We decided to go back to DAFO Brace #4
This Butterfly themed DAFO worked great, it was a little thinner at the back allowing a bit flexibility but not a lot, and since there was no metal no heaviness we thought that's the reason she got better. She learned to jump and ride her trike in this AFO. Brace #5
She grew out and my orthotist moved, just my luck. The new orthotist again suggested the darn hinged AFO. This time I was prepared, I told him all that happened before and how the metal didn't work. He suggested rubber instead of metal. This AFO was called Dorsi assist Tamarack. I thought to give this one more chance now that Kyra is stronger and can talk and tell me if things go wrong. For first few weeks this AFO was amazing. Little did I know that it wasn't. Kyra suddenly started turning her foot inside again. We talked to Orthotist about it and he said its coming from her hips. Her PT did not agree. I asked few more therapists and everyone said it doesn't feel like her hips are the problem. Orthotist asked me to change shoes, I spent $70 and still no results. Now Kyra was tip toeing in the shoe. I didn't even know that was possible. Then she started falling on her feet in the AFO with shoes on. She lost all her confidence, was scared to do things that she was doing before, was scared to even walk. I had no patience to spare. I was angry mama bear going crazy unable to help my kid. I finally had a big meeting with PT and her supervisor and came to a conclusion that even though Kyra has a great range of motion she does not have the strength to use that motion and the hinge AFO are just making things worse. She couldnt bring the foot in neutral position herself and the AFO didnt help either as seen in the picture.
We added goals to her PT and hippo therapy to strenghten her ankle joint to dorsiflex more. Brace #6
Back to Butterfly theme DAFO, which is sturdy and keeps her ankle in neutral position. I had to fight a lot for this, I had to go against a lot of doctors and had to trust my mom intuition on this. I am so glad I did. She is walking better and Orthotist did agree that I was right.
I had to pay for all these AFO's sometimes costing me $1200 per AFO depending on when I ordered. I am only allowed 1 AFO in 6 months and sometimes I had 2 within 6 months.
Moral here is always trust your gut feeling, fight and fight till you feel you are satisfied and are able to help your child. I am just sharing my experience with the brace and Kyra's situation. I am in no way saying that hinged AFO are not good, they are just not a good fit for us at this stage, may be in future when Kyra has more strength in her foot to dorsiflex on her own.
Lastly about tips and tricks
Kyra has been wearing AFO since she was 13 months old, but we started slow. These AFO are only meant to be worn while weight bearing i.e standing, walking.
Have them wear an hr first and slowly start. Buy comfortable shoes. Make it shiny and glam by applying stickers. Have them choose the print, don't force it.
When they realize its helping them, they start to ask for it. Kyra only wears AFO for 4-5 hrs a day.
Hope this helps you guys make a decision if you are stuck like me considering AFO.
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