My Daughter was diagnosed at 4years old. It took about 6mo for dx.
Due to a broken arm on her x chromosone she received from her father my x took over and I am a carrier. In some ways her dmd seems to be milder then boys her age. She still can walk a little with a walker. But most of the time she is in her power chair. She can still transfer her self out of her powerchair.
My 13 year old son was diagnosed at 8months old. His CPK was elevated.
We decided not to put him through further tests.
When Alisha went off the prednesone her heart condition seemed better.
Timothy walked until he was 11. Since he came off the prednesone.
Both lost weight Alisha 60 pounds, Timothy about 30lbs.
They seem alot happier since being off the med.
Prednesone..helps for awhile but the risks that it puts on bone health, the weight gain puts a huge stress on the heart, the heart being a muscle too is already at risk.
Alisha at 16 they told me at the cardio's office to go home and prepare for hospice. We took her off the prednesone and with a combo of heart meds her heart was more stable in six months.
My daughter has DMD, diagnosed at 15 months completely by accident. She was being treated for failure to thrive for her first year. At 10 months they diagnosed her with Turner's Syndrome and at 15 months they decided to treat with growth harmone, because she would be getting injections they did a base line CPK. That is when we found out she had DMD, after a quick muscle byopsy it was confirmed. In 2006, we did the heel cord surgery and in 2012 we started steroids. We were seeing a marked decrease in her strength and increased weaknesses. She is on Deflazacort...afer 120 days we saw her strength increase and her weakness level off. Although we saw weight gain initially, after about 12 months she has only gained 6 pounds and we are not health nuts, we go to McDonalds once a week and pizza every Friday! I am a believer in Deflazacort. I am thankful she is still walking. I've been reading about alot of heart problems lately in people with DMD, next week we go to the cardiologist for the first time since starting steroids, I don't see any signs in my daughter but I want to make sure I am asking all the right questions, unfortunately she doesn't get to see the same doctor every time. Any advice is appreciated.
Hi Vicki, I'm just curious, my son Andrew is 7 and is on Deflazacort and has been for about a year now. He has not gained any weight at all and we too are not health nuts!! Unfortunately we have seen horrible behaviors lately and they are sky rocketing. I'm just curious if you see the behaviors too. It's to the point where we are debating on stopping steroids altogether, but are afraid he will lose the positive effects.We are so torn, any help or advice is so appreciated. Thank you! Jodi
Hello Mitch and Jodi,
I am sorry you are having issues with your son. I will recount to you my 13 year story with Deflazacort and my now 19 year old son Kyle. Kyle was an emotional kid even before the steroid. When he got started on Deflazacort we noticed that emotional volatility was increased. Never to the point of huge tantrums though. We did our best to diffuse those emotions when we saw them coming. It takes practice and comedy is a very useful tool. You need to appreciate that there is nothing you can do to change the child, he needs the meds and the side effects are what they are. That being the case, Andrew needs to be treated differently, not with kid gloves so much as with hand puppets. Remember that the behaviour you are seeing is an amplification of the frustrations he is feeling. Find the root of the behaviour and that is where you will find the method of diffusing it.