Hey everyone,
I would love any input about this dx. I work as an OT in pediatrics and because this is so rare, I'm hoping to gain insight from all of the families. I'm trying to learn about the prognosis for children. Thank you so much in advance!
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So this probably won’t be so helpful, but there is so much variation in what is affected that it is challenging to discuss prognosis. My daughter (5 year old) is fully verbal, walks, runs, and just recently started jumping. She has lower than normal core strength, and has difficulty stepping down off a curb. There are others who are nonverbal, nonmobile and have intellectual disabilities. I think each child needs to be assed individually and pushed to be their best selves.