My son  went into wheelchair last year and his doctor is suggesting to reduce his deflazacort dose from 30 mg to 15mg over the time of 6 months. He is going to be 15 years. please can you share experience and opinions on to reduce or not, on what to watch for after reducing, what measurements to take before reducing etc.

My son experienced many side effects of deflazacort: absolute no growth in height,  cataracts, vertebrae compression fractures, and concern about developing diabetes.  


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Our son is 18 and Dr Wong has kept him at 36 mg of deflazacort. I believe the benefits out weigh the side effects for Jacob. Yes, he has cateracts but they are not bad enough to have surgery. He also had a 1 compression fx due to a fall, since he stopped walking he has had no more and he is on fosamx, Ca and 2,000 IU. I believe the deflazacort has kept his pul fx and possibly his caridac fx close to normal levels, I do not know of a boy who has this good of pul fx levels who are not on deflazacort. It is a tough blance but so far we are very happy with the results, we have been able to deal with the side effects. Good Luck!.
My son is going to be 18 next month and has lost the ability to walk for 5 1/2 years. We have not lower his dose which is currently 42mg daily. I feel this has kept Johnnys heart, breathing and some of his arm function. He has had a little increase in height over the years, cataracts, no compression fractures and no diabetes. How is hes weight and diet in regards to the diabetes?

Hi Cheri,
My son is 17 years old and has never been on steroids. He has very good pulmonary and cardiac function.
My son Jonathan is 19 and has never taken steroids, he just started cardiac meds in April of this year as his ejection fraction just dropped below what is considered normal. His pulmonary function is still well in the normal range. We are considering very low dose steroids for the purpose of keeping his upper body strength and preserving cardiac and pulmonary function. It is hard weighing the pros and cons. His neurologist said she would start him at a dose of 10mg prednisone (that would be a fairly close equivalent to 15 mg deflazacort). We would probably talk to her about deflazacort as well.

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