Did the boys get sip-vents or trachs? Have been wondering and hope they got NIV. I don't think at their ages that they could be in the "late stages"? My son is almost 32 and I don't consider him in any late stages. Thanks to non-invasive venting, sip-vent while up, v-pap while in bed, I expect our guys will live much longer than Duchenne guys used to.
I understand your meaning--just don't like the terminology! Your boys sound like sip-vents would be perfect for them.
I am not implying that we are anticipating losing them anytime soon. I use the term late stage as I understand the diseases progression is defined.
They did not get trached as recommended initially by the pulomonologist. They use v-paps at night and bi-paps during the day.
Starting steroids late will only slow the decline they will still need constant ventilation. Ann is right sip-vents would be perfect. using bi-pap masks or nasal pillows all the day and night sucks.