welcome to NeuroTalk Laura tho so sorry to hear of the striggles your little ones are going thru
I dont know much about NF1 but did find this and hope it may be helpful to you
http://www.kidshealth.org/parent/system/ill/nf.html
we also have a children's health forum so you may want to also post there in case other parents have any insight for you
http://neurotalk.psychcentral.com/forum9.html
hoping you find answers
Cheri