Oh Jane ... my heart goes out to you & the challenges that the first year of diagnosis brings with it ... it certainly is a roller coaster ride. Ryan's diagnosis is fairly late for the typical DMD timeline ... how did they find it ?
Samuel was delayed on all his milestones & when I compared him with other children his age I felt his gross motor skills were compromised. I mentioned this to his kindy teacher & in the third term of that year she recommended that we have him assessed by a physio. We went to our GP who advised us to begin by seeing a paediatrician. He gave us a referral to a physio but also wanted us to have a blood test done to "rule out a couple of other things" but didn't indicate anything more than that. Two days later he wanted to see us both about the blood test results at which point I KNEW it was something big. That moment is burned into my memory FOREVER as I am sure is that moment for you. Samuel had a muscle biopsy 4 months later which found that he has traces of dystrophin which is a plus but also confirmed the diagnosis of DMD. He also went onto prednisone at that time so has been on them for 3 years now ... his current daily dose is 3mls. So far he is doing well & his condition isn't glaringly obvious yet to those who don't know but we can certainly see the deterioration over the past 3 years. I would love to hear more about where you are at in your journey ... what you are thinking, how you are feeling, how is your husband with it etc. Having other people to share with is a real blessing & a lightening of one's burden. This website is invaluable for that !
Hi Jane. Sorry about the diagnosis. Justin has been on prednisone for long term. For about 5yrs or so now. Justin stopped walking in Nov. 2005 when he was 9.5yrs old. We did stop the steroids for a short time after he stopped walking. We started him back on them because of research supporting that it helps keep the heart and lungs stronger. Our orthopedic dr also talked to us about starting him back on them because it helps slow down scoliosis. It does keep some boys walking longer, but we didnt see that benefit from them. Drawbacks.....until he had been on it for a month or so, we saw mood swings, increased anger/temper. Justin has the red apple cheecks. Before he took a break from them, we saw no increased appetite or weight gain, in fact he lost weight, stopped eating and had to have a feeding tube placed. SInce restarting them, he gained about 20lbs. That weight started at about the time he turned 11.5, so it could be prepuberty issues also. He has maintained his weight, so its ok. Starting or not starting steroids is a hard choice. There are benefits and drawbacks. ALot of people put their son on deflazacort and say they see less side effects. We never went that route because Justins side effects have been minimal. Take your time getting settled into this "new" life!
Hi Jane, glad you found PPMD community. Join our Aussie's group? Love your photo - can you send me a couple of photos? I am webmaster of PPA (other hat) and am always looking for photos to decorate the articles and give a face to DMD on our site.