I think my wife may have replied to you on Facebook, since she mentioned a very similar post there. Both our kids are on 12mg/day. Hayden(8) is 43 or 44 pounds and Cameron(5) is about 38 pounds. They were just weighed this week at abone density scan. I think we'll ask to up Hayden's dose to 18mg/day soon. The pills we get are 6mg, He seems to be struggling a bit more recently.
I did some looking, and it looks like the suggested dose is .9mg/day/kg. So 18mg would be about right for the low to mid-40 pound range.
Hi Wendy, Andrew is right, though as kids grow and get older they will reach a max/day no matter how tall or how much they weigh. Our son got to 125 pounds and had been on 36mg/day for a couple of years. Then he lost weight and has been oscillating between 101 and 108 for the past few years. Dosage doesn't change it remains at 36mg/day. Most assuredly something to discuss with your sons physician. Suggest you read up on deflazacort to get better grounded in some of the side effects that come with the drug usage over time. It's good stuff to know and help keep you aware of changes what's normal and whats not as your son grows up.
I believe that we may have started out on too high of a dosage. We are experiencing no growth for the last almost 2 yrs he has been on it. Just wondering what our Neurologist is thinking. Sometimes I wonder if she knows. I seem to know more about the disease and upcoming treatments and vitamins etc than she. Its a little frustrating for sure.
Too true. My wife has invested a bushel of hours educating some in the medical community that have treated our son. However, "stunted / suppressed" growth is most definitely a side effect. Our pediatric learned along side of us, even though the initial indications were done when our son started not tracking "normally" at age 3. We started deflazacort when he was just turning 6 years old (45 inches), but he continued to grow at a reduces rate, we didn't really see the difference until he was in his third year of cub scouts, where his peers were all growing much faster. Anyway we're short folks, so it doesn't matter as much as something like school grades or moral compass development.
Growth suppression is one of the side-effects, like it or not. I know it's one thing to talk about the possibility of it happening (and thinking it will surely be to someone else's kid) , and quite another to actually witness and deal with first hand. I've struggled with this issue and still do. The professionals encourage us to give them a pill (steroids) which suppresses their growth, so why can't we give them another pill or shot to prevent that? But being short isn't the end of the world, right? As Andrew said, the formula is 0.9mg/kg/day. Our son was on 18mg to start at age 7, then was on 21mg for several years, and now has been at 24mg for another several years (age 13). His "little brother", who is 3 years younger, is about 10inches taller than he is now! And yet we all know who is boss. I think it was a wise Tweety Bird who once said, "I'm not short, I'm concentwated awesome".
Andrea - Very true! Although he is small he is still "in charge"!
I appreciate the input. His size hasn't become an issue as of yet, since he is in the first grade. He has a lot of other kids still his size. He is extremely intelligent and surpasses all expectations. He started school when he was four days over his 5th birthday. He is the youngest in his class. My main concern was just was the doctor right in the dosage? I seem to question a lot of her abilities and knowledge. I know that sounds crazy because she is the doctor right? But, I feel as though she has taken the "there's not much we can do anyway" approach. That is a little aggravating for sure.
As others have said, we often know more about our kid's dmd than the docs do. We only have to focus on the one disease and the one family, whereas the professionals have many patients and diseases to stay updated on. It's your call if you think your son is not getting the health care he needs and deserves. Both my boys (one has dmd, one does not) are often the youngest in the class as they are born in the summer which can for sure cause its own problems.
Please check out the care recommendations here on PPMD and bring up any issues with your neurologist. Then if she is not willing to get up to speed, you go shopping for another neurologist. I'm from Canada, so I really don't know about this, but I read that a lot of U.S. families go to Cincinnati or one of the other dmd specialized centers at least once a year, so maybe that will be your best bet to make sure your son is getting the best care. Listen to your "mom intuition".
I wish you luck,