I was asking about day AFO's. We have had night ones for a while. I thought I had read that day AFO's for ambulatory boys was not advised. Any data I can give to our doc? I am starting to doubt his knowlegde about DMD. We have seen Dr. Wong from Cincy, but I wanted to continue to see someone local.
Laurie Paschal said:
Are you referring to ones worn during the day or at night? I've always been told that daytime AFOs are a big no-no for ambulatory boys, but night AFOs are a must from the beginning.
When my son was diagnosed the first neurologist we saw told us to have our son wear the AFO's during the daytime. We soon learned they were not that up on DMD either with that and other things we were told and not told. After doing some research and then going to Dr. Wong we soon learned that this was not recommended and why and switched him to night time only. I would think there would be some information in writing regarding this from Dr. Wong or from PPMD. Isn't there a standard of care for DMD wriitten up or something in the works?
My son is 11 still ambulatory and WOULD NOT BE had it not been for his daily AFO's. We spent the first year in night splints and even though he wore those, he was still HIGH on his toes during the day and needed constant stretching. He would not be walking today being that high on his toes because his ankles would not be able to support him. Some kids it works perfectly fine to wear the night splints and do ok during the day. My son, since 4, has been a toe walker and a HIGH toe walker he was ! We did ( and still do) lots of stretching, but we would be in worse shape without wearing daily AFO's. Now, he has recently begun to wear night splints too. Poor guy I know, but he is used to this and just accepts it.