March 31, 2011 at 10:15 am

In my personal opinion I would say continue with your treatment until your neurological evaluations show no more improvement and then back off slowly… we thought my daughter was finished improving. As the only thing left to recover were the reflexes and some of the sensory nerves in her feet and fingers. (your toes and your finger tips will be the very last to recover, if they do) your nerves regenerate at 1″ a week, it starts at your chore and works its way to the tips, is what we were told. Her last evaluation we got a very faint reflex in her foot, this gave us the hope that the medicine is still doing someting, we are still backing off instead of every 3 weeks, we had a schedule like this and I was diligent to the day.

90 mg over 2 days at 3 weeks apart (that was the norm for 2 years. )
then we went 90 mg over 2 days at 4 weeks apart for two sessions,
then we went 90 mg over 2 days at 5 weeks apart for two sessions
then 6, then 7, we are about to go to our second round at 8… once we have the second round of eight, we are going to 45 mg at 8 weeks, for two sessions. then we are going to college and we will stop and “see what happens”””

I hope this tidbit of information helps you
(we are seen at Childrens Hospital in Boston)