I need your help! Our three sons were diagnosed with DMD in November in 2012. We live in Ireland and were told that it is up to us if/when to start our seven year old on steroids. The plan is to start them next week - however I am concerned as the only thing they are doing as a baseline is to check if he has immunity to chickenpox. There has been no mention of bone scans or other blood tests and we were told the use of 'supplements' will be up to us! I understand that Vit D and phosphates should be prescribed? Can anyone tell me what we should be prescribed and what baseline tests/scans etc we should ask for. Many thanks,
Best wishes, Paula
Hi there Paula,
This sounds awfully familiar to me... I wondered who are you seeing for your boys? When my own was diagnosed I was sent to a certain specialist in CRC in clontarf and after 2 visits I begged my GP to send us somewhere else...All we ever got up there was 10 min of super quick tests finished by "have you thought about steroids?" and that was it. I was told that when I was ready for them he would post me a prescription. I already didn't like him but when I found out there were all sorts of test that needed to be done before, that decided me t change and never look back. We now started to see Dr Webb in Tallaght and his team and they are amazing. Im not implying your specialists are not good, but I wished I was told about everything up front. One visit to Tallght and all my questions were answered. Dylan got a few blood tests, including the chickenpox immunity (even though he had it already) and others, I think VIT D levels, and he had a DEXA scan and a xray of his hand to determine the real bone age I think. He also got checked by a cardio, lung specialist, endocrinologist ( great for questions about steroids) orthopaedist and Dr Webb along with a paediatrician. They also approved of all the supplements I give him and knew about every trial/treatments... going on. Dylan started taking Q10, idebenone, glutamine, carnitine and omega 3 for kids over a year ago and we started steroids about 2 weeks ago. (he turned 7 end of March). I am convinced the supplements have really helped, and Dylan is flying. Sorry for the long reply! All I would say is that I would really push for all these things to be checked before you start steroids so you have a baseline of everything. Email me with whatever questions you have, I'm not here often but I will see them in my inbox.
Sorry Have had IT problems! many thanks Damien & Anna. Lovely of you to respond. Great to see these messages - difficult day as George & Isaac celebrated their third birthday today. Always been a big fan of birthdays but I must say we have found it a day of mixed emotions.
Very Best Wishes,
Paula & The Men