Thanks Naomi, I asked as Dylan has never been immunised as when he was a baby was allergic to everything going so we decided not to. We only recently decided to try the steroids as previously since diagnosis weighed up the pro's and con's and with side effects decided not to. We changed our minds recently when we found out from a mum in ppmd who has boys with the same deletions and they are very similar to our son in progression and late diagnosis etc. They are having great success on dfz and her 16 year old is still walking. However, they are fully vaccinated. In NZ they will not do the steroids unless our son is vaccinated, so Dylan has had blood tests to see what antibodies he has. He has had chicken pox, and waiting to tests on the rest, but as he has had no other childhood illnesses know they will want him to have the rest.
From all my research in the past I am not keen to vaccinate but the medical profession put such a bad spin on not doing it. Could you explain more about the live vaccines please and the bad effects with the steroids, and what you have read or where I can get this information? Our homeopath was suggesting detoxing straight after and she can give back the vaccine in homeopath form to counteract some side effects.I had wanted our paediatrician to look into homeoprophlactics but she is not convinced. Our paed is a biomed so into slightly alternative, but not alternative enough unfortunately. The neurologists are totally not so we wont even go there. My husband has bought into the whole fear thing about not vaccinating and I am trying to tell him with what we are doing with diet, supplements and homeopathics that as soon as he gets sick we will be right on to it. Anyway am keen to know as much as I can about the non vacinnation option, so I can inform my paediatrician, do you have a health professional she can email perhaps? As much info as you can if you dont mind Naomi, thanks so much for your help. Regards Debbie
Thanks Naomi, will give it a go and let you know if I have any further questions. Regards Debbie
Hi,my son recently diagnosed with DMD.How is your son doing so far?Can I ask is he still walking?Why did not you use prednisone and choose deflazacort?sorry for so many questions but we have to decide this week what steroids should we start for our son?you answers can help us.Also how can we get prescription for Deflazacort?
Hi Jia, our son Dylan is 11 years old and has DMD exons 3-7 missing. We found out he had this when he was 8, quite common for those who have exons missing in the beginning of the Dystropin gene to be diagnosed late. We didnt do the steroids for a year and decided on the Deflazacort as it has less side effects compared to the prednisone. Dylan also has ADHD and found that the Prednisone (ReadyPred as Dylan cant swallow pills and only liquids) made him very angry and violent and made his ADHD worse. Whereas the Dfz doesn't seem to do the same thing, he has still put on weight tho and we have to be very careful with his diet as he has got a rather large tummy and classic round face (cushonoid features). The difference in Dylan once he started using steroids was amazing, from having to be carried one day, to being able to run the next day once he was on it. Dylan is still walking, tho gets very tired, and we hope that he is like others with the deletion in this part of the gene, that he is slower progressing and will be walking until 17. He uses day splints and special shoes and this helps to support his ankles so he doesn't fall over as much. He does get very tired, and we use supplements to help with this too. He has liquid vitamin d 5000iu with 400mg COQ10 and a probiotic in the mornings, plus complex B, magnesium and calcium 2 x daily, multi vits, antioxidants etc. We get DFZ from Masters Pharmaceuticals in the UK. Details below:
T: 0208 327 0900 F: 0208 327 0901 E: email@example.com W: masters-sp.com
Masters Speciality Pharma, 380 Centennial Avenue, Centennial Park, Elstree, Hertfordshire, WD6 3TJ
Let me know how you get on. Kind regards Debbie
Hi Nia, we also use a homeopathic DFZ remedy that our homeopath makes up from the DFZ, and he goes to an energy healer friend (who follows the principles of Barbara Anne Brennan) that takes the side effects of the DFZ from his aura and gives him more energy. We are trying everything, costs a lot and we cant afford it, however, just what we personally feel we need to do to keep him health. It is all working very well, the neurologist at the last visit said there was not much else she could add as he is doing so well. We hope and pray that it may continue. Wishing you all the very best on this journey. Kind regards Debbie.
Thanks for detail anserw.I am in Dallas and wondering how can I get prescription for Deflazacort as his Neurologist will not prescribe other than prednisone.
Send me a friend request.
Heard from someone in the area. They see Dr Iannaconne at Dallas Childrens, and were prescribed Deflazacort.
Thanks Keith,can you make sure with them that Dr.Iannaconne prescribed Deflazacort,because we asked her in last appointmant and she said she don't see any difference between prednisone and defalazacort.We have appointment on Nov 24th.Thanks again.