My son just started taking Deflazacort. His Dr has him taking 6mg for 30 days, then 12mg for the next 30, and then after that the full 18mg dose. He said that there is a very high failure rate when starting right off with the full recommended dosage due to behaviour problems but he has had great sucess with this method. Has anyone else heard of this?

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My son began with 15 mg right off the bat. He never had any behavior problems and has done great on deflazacort. He has been on it for almost 4 years now and is still doing great on the same dosage!
Exact same with Sam.

Lori Ware said:
My son began with 15 mg right off the bat. He never had any behavior problems and has done great on deflazacort. He has been on it for almost 4 years now and is still doing great on the same dosage!
No, never heard of it. I spoke with Dr. Biggar when I first found out about Nicolas. He told me Nicolas would be started on 18 mg off the bat. He then directed us to Dr. Wong (so did many other families in our area), and our first visit was 3 months after diagnosis. Nicolas was put on 18 mg right away.
Never heard of it either. We started Kyle on 21mg right off the bat. No behaviorial issues - actually, that's why we went with deflazacort - the side affects (including behaviorial) aren't there like they've seen with prednisone. Good luck.
Aaron started out on 12 mg of Deflazacort but due to some blood test results he was backed off to 6 mg. His size would typically indicate a substantially higher dosage, but our doctor feels that what he's taking is producing good results without much at all in the way of side effects. Our dosage is so low that I'm probably not helpful to your question, but I wanted to add that over the long term I don't think your son will lose the overall benefit by easing into the dosages and you will have the opportunity to watch him for changes before deciding to increase the dosage. Like others have said Deflazacort doesn't have so many side effects to watch for as prednisone, but still everyone reacts differently to medication and I don't think it's a bad thing to ease a little body into long-term meds. These decisions are all so hard...just go with your gut. {{{HUGS}}} (Your son wasn't taking other steroids and then SWITCHING to Deflazacort, was he?)
we did 6, 12 and 18 w/o being advised to. Micah has mild autism, so we wanted to ease him into his
prescribed dosage.

i wonder what the affects in their brain is when you start off at high dose, messing with the pituitary function...being at a normal level, then having it drop suddenly with high dose steroids.

i don't know, but maybe gradual is better tolerated?
well, since starting Deflazacort last week we've definitely seen an increase in his energy level. There's been no noticeable change in his ability to climb stairs or get up off the floor but we're hopeful that it will help once he's up to the full dose.
Hi Jason, I was wondering what you saw after you increased the dose to 12 then 18.

Jason Gautier said:
well, since starting Deflazacort last week we've definitely seen an increase in his energy level. There's been no noticeable change in his ability to climb stairs or get up off the floor but we're hopeful that it will help once he's up to the full dose.
hard to say because he was only at the lower doses for a month each.  there was probably a little improvement.   it's been a year and a half now and we've seen a little decline over the last 6 months.
Thanks, I was thinking to start at 6 mg in my 3.5 year old, just to give his body a little time to adjust.

Jason Gautier said:
hard to say because he was only at the lower doses for a month each.  there was probably a little improvement.   it's been a year and a half now and we've seen a little decline over the last 6 months.
Sounds good. :)

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