Has anyone noticed less balance and constant falls after starting deflazacort?

My kid satrted deflazacort 2 weeks ago,he is 6 1/2 and today there have been reports of constant falling for the last two days at school, less balance and once he falled down backwards, I write you because I do not have Brenda Wong´s mail here at my office and I need to know, if this is a normal period because of deflazacort 22mg daily,if not, I need to search what is going on.

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Permalink Reply by Cheri Gunvalson on August 20, 2011 at 10:59am

School and school activity can vary so much.  I would make sure he was well rested and observe at home under regular activities.  Is he more active since on the med?  If so one would expect more falls.  Years ago our son who is now 19 was put on a very high weekend dosing of deflazacort with then no med during the week and while he was on the very high doses was falling all the time, I don't think many MDs use this protocal now as it was not as effective as the daily dosing.  We switched to the .9mg/kg/day and the problem went away.  I realize you are not on the weekend high doses but if you are like me you might want to know about it and the problem.  There was a diagnosis for this but unfortunately I can't remember the term.
Permalink Reply by Veronica E. on August 20, 2011 at 11:16am
To echo what Cheri just said, Max has been on Deflazacort for a month now, and his energy has increased a bunch, and he's doing things he didn't before he started the med (walking super fast, doing this funny little dance, etc.), which I could see could cause more falls.
Permalink Reply by Joy Narmore on August 23, 2011 at 5:13pm

Hi

 My son started Deflazacort 3 years ago and started at 21mg........within a week, he started falling and was not  able to get up off the ground.( he had been able to previously).......I knew his dose was the standard dose according to his weight but I called his doc and told him about his falling, etc......they didn't believe it was due to the deflazacort but I told them it practically happened overnight!  I said I wanted to reduce the dose by 3mg (I was told that was how the pills were made and had to go up and down by 3 mg each time) We went down 3mg and in a week, he was back to where he had been before we started the deflazacort.  I think that some kids just don't follow the standard dosing and it is too much for them at first.  This may have been something that just helped my son, but I hope it can help yours too.

Permalink Reply by Clare Harper on August 24, 2011 at 7:37am

i agree with Joy, Lewis only started about 6 weeks ago on 18 mg deflazacort and he was practically struggling to keep up with himself and a weird wobbly stance,and falling a lot more .I took him down to 15mg and have noticed it settled and steady him more. I still think he is a a bit of a high dose ,but i will see.I also think maybe if they are on Idebenone perhaps they are not needing as much deflazacourt,this last thought based solely on what i have observed on my own son.

Permalink Reply by JUAN PEDRO ARBULU on August 24, 2011 at 12:03pm
Thanks a lot  Cheri, he is more active and I will check u¡onthe regime you use for weekends, i´m new and worried about deflazacort..

Cheri Gunvalson said:

School and school activity can vary so much.  I would make sure he was well rested and observe at home under regular activities.  Is he more active since on the med?  If so one would expect more falls.  Years ago our son who is now 19 was put on a very high weekend dosing of deflazacort with then no med during the week and while he was on the very high doses was falling all the time, I don't think many MDs use this protocal now as it was not as effective as the daily dosing.  We switched to the .9mg/kg/day and the problem went away.  I realize you are not on the weekend high doses but if you are like me you might want to know about it and the problem.  There was a diagnosis for this but unfortunately I can't remember the term.
Permalink Reply by JUAN PEDRO ARBULU on August 24, 2011 at 12:04pm

good Veronica my son is better too..lets keep the side effects at minimum.
Veronica E. said:
To echo what Cheri just said, Max has been on Deflazacort for a month now, and his energy has increased a bunch, and he's doing things he didn't before he started the med (walking super fast, doing this funny little dance, etc.), which I could see could cause more falls.
Permalink Reply by JUAN PEDRO ARBULU on August 24, 2011 at 12:06pm
great info Joy, the same happened to us overnight, so I will keep your advice in case he keeps falling.

Joy Narmore said:

Hi

 My son started Deflazacort 3 years ago and started at 21mg........within a week, he started falling and was not  able to get up off the ground.( he had been able to previously).......I knew his dose was the standard dose according to his weight but I called his doc and told him about his falling, etc......they didn't believe it was due to the deflazacort but I told them it practically happened overnight!  I said I wanted to reduce the dose by 3mg (I was told that was how the pills were made and had to go up and down by 3 mg each time) We went down 3mg and in a week, he was back to where he had been before we started the deflazacort.  I think that some kids just don't follow the standard dosing and it is too much for them at first.  This may have been something that just helped my son, but I hope it can help yours too.

Permalink Reply by JUAN PEDRO ARBULU on August 24, 2011 at 12:07pm
thank you Clare, I am starting 300mg of idebenone next week too!

Clare Harper said:

i agree with Joy, Lewis only started about 6 weeks ago on 18 mg deflazacort and he was practically struggling to keep up with himself and a weird wobbly stance,and falling a lot more .I took him down to 15mg and have noticed it settled and steady him more. I still think he is a a bit of a high dose ,but i will see.I also think maybe if they are on Idebenone perhaps they are not needing as much deflazacourt,this last thought based solely on what i have observed on my own son.

Permalink Reply by Clare Harper on August 24, 2011 at 12:08pm

yeah!!! great stuff !!!

 

Permalink Reply by Joshua's mom on August 31, 2011 at 11:16pm

Joshua is 8, weighs 64lbs and is only on 12mg of Deflazacort daily.  He was supposed to move up another 6mg in June, but the we and the doctors decided not to because of how well he is doing.  The doctors will prescribe more if he really needs it, but until then, 12mg is enough.  That's odd there is so much of a drastic difference between dosages.

 

Permalink Reply by Cheri Gunvalson on September 1, 2011 at 9:43am
MDs may start out a a lower dose and stay there for awhile for younger boys to see how they will tolerate the drug. Note in the research the standard does of .9 mg/kg for deflazacort and .75 mg for prednisone.  When the MD does adjust the dose up for his wt even if the boy "looks good" they might want to make the most of what he has in order to prepare for unfortunately the decline.  11 years ago our son was 8 and started on steroids.  He is now 19.  At that time there was not the research we have now and in hindsight I would have started him much sooner.  That said thre is no comparision when you look at other DMD  boys who are 19 and our son and other dmd young men who have been on steroids as they are so much stronger and is so much more independant. 
Permalink Reply by Joshua's mom on September 4, 2011 at 10:40pm
Joshua was diagnosed at 6 weeks old and started 6mg of Deflazacort when he was 3 years old.  They bumped him up to 12mg when he was 6 years old.  That's why I see such a drastic difference to others.

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