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Nana, Have you gone to a different schedule yet and if so, what is the schedule?
Tina, So are you saying the best time to give steroids is between 2 am nad 8 am or 4 pm to midnight. Sorry, I just cannot follow the above, little confusing for me, sorry. can you tell me how you dose your sons? My son is on 40 mg every other day, but i just realized that maybe that is too high and the nurse gave us the wrong dosage because his new prescription bottle says 30 mg EOD. please tell me what you think.
Donna, We did change to alternate day scheduling Sept. 2010 and it improved my son's behavior significantly. He still has problems with ADHD symptoms but his behavior is much more managable. I was told it is best to give the steroid in the morning because tends to follow the body's usual pattern. We actual give our son his dose in the evening because it tends to make him too hyper to concentrate on his school work if we give it in the morning. Are there any reasons you are trying alternate day dosing versus other schedules? Dosing is usually calculated based on weight- is he taking prednisone or deflazacort? Let me know if you have any more questions. best wishes to your family
:) Nana
Donna Cicardo said:
Nana, Have you gone to a different schedule yet and if so, what is the schedule?
Donna, Are you using double the daily dose every other day? The daily dose is 0.9 mg/kg, so your 40 mg dose seems very high. I was under the impression that ADT will just be the 0.9 mg/kg dose every other day. Does one need to double that?
Have any of you notice if the boys have good vertical growth while on every other day regime? I do know that the weekend regime does preserve growth and minimizes other side effects, how about the alternate day one?
Well I was wrong, we decreased alex down to 30 mg every other day and today, he could barely stand and was in alot of pain. Called the doctor back and he said based on his weight of 118 lbs (53.6 kg) he needs to stay on 40 mg every other day. If you multiple 53.6 x 0.9 mg/kg that equals 48.5 mg of prednisone. I think after seeing him struggle so much today we will keep him at 40 mg. We have decided to join an aquatics center to help with weight control and to hopefully lose some weight. Hope this helps everyone. As far as some of his side effects, he takes prozac for depression and since being on that it has made a complete uturn nad he is so much better. As far as his hives, the doctors said (after seeing 4 doctors) they have all concluded that he has chronic urticaria, which does not come from DMD but probably comes from his extreme allergies to foods, molds, and pollens. If you ask me, I believe an every other day dose is a good regimen. Thanks so much for your comments, it has been very helpful. We have alos started him on idebenone and his fvc lung functoin increased by 5%. next we are going to slow start him on Bvitamins and glutathioine and amino acids. good luck everyone.
Prednisone is 0.75 mg/kg/day, so 40 mg is the right dose for his weight. 0.9 mg/kg is for deflazacort. Thank you!
Thanks Ofelia, mistook the 0.9 for the 0.75. that makes alot more sense.
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