PPMD Community

Beginning Steroids Late

Has anyone ever heard of a DMD boy (young man) starting steroids late in the process?
New neurologist (old one retired) was wondering if it may help the boys breathing.
We opted to not do it 15 years ago when they were diagnosed. Obviously, we are in the late stages of the disease and the boys are on constant ventilation. They are 18 and 21.

Thanks for any input.

Favorite

0 members favorited this

▶ Reply to This

Replies to This Discussion

Permalink Reply by Ann Avery on September 8, 2012 at 1:36pm

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.

▶ Reply

Permalink Reply by Mortman on September 10, 2012 at 2:39pm

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.

▶ Reply

Permalink Reply by Ann Avery on September 10, 2012 at 4:57pm

I understand your meaning--just don't like the terminology! Your boys sound like sip-vents would be perfect for them.

Mortman said:

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.

▶ Reply

Permalink Reply by Jason Darienzo on September 10, 2012 at 10:01pm

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.

http://www.doctorbach.com/