I am eagerly waiting for yr comments on losartan . Last week I just consulted my son's neurologist abt using Losartan for him who is 4 yr old and not on any steriods . She said it is ok as far as safety issues are concerned , but before prescribing ( as losartan here in India is available only against prescription ) she would like to know more abt it from those as young as my son who are already using it , so just remembered u as your son is not very old , he is just around 6 yrs if am not wrong . Further she would even like to put it before the ethics committee of her hospital and start systematic clinical trial with losartan on young DMD kids . But to do all this she needs some more data . She is ready to think out of box and take up the challenges .
Would appreciate hearing from u at earliest in this regard
Just read yr below comment on Amrit's page . Just want to know more abt Losartan . My email id email@example.com . My 4 yr old is DMD . Doctors here in Mumbai India think that he does not require steroids at the moment . So we are thinking of some other options to slow down the progress including idebenone . Has exchanged some posts with Joshua's Mom abt idebenone as well watched yr comments on it . If u can upbreast me abt losartan it will be really nice of u
Hi,my son is about 6 years.He is on the waiting list for this trial.we are from London ON where the ACE 031 is being conducted.I called my son's neurologist who is also running the trial here,and he told me that my son is supposed to enter the trial on June.I had the impression that they will go on with this trial.Moreover,It seems that this drug is working.Anyway,I am going now to get more news and if you like I can provide you with the updates.
My son uses:DFZ,ECGC,LOSARTAN (ON MY OWN),Vit D,fish oil,multivit,Coq10,Taurine(aminoacid),Calcium.
I highly recommend Losartan,and I bet that it might stop fibrosis+reduce the side effects of DFZ.
I do everything I can do then rely on God because doctors and medicine are just causes in any treatment,but God is the CAUSATIVE to this treatment because he is the omnipotent and merciful.
I don't know if this drug is available in Israel. How old is your son? I give mine (wich is 3 and a half) green tea extracts, reishi, fish oil and nigella oil. A current study will shortly determine the efficacity of green tea, see the clinical trials site. Have you heard about the Pr. Tremblay's meganucleases technique? It gives much hope. All the best,
I have been trying since the day you sent me the message to get back to you, but the computer wouldn't let my message send.
We, and everyone in Joshua's life, can see improvement since he started Idebenone. Even those who didn't know he started it noticed. Before he started the idebenone, he did the 6 minute walk test and took 222 steps. After 6 months of Idebenone, he walked 397 steps. The physiotherapist noticed his legs weren't as tight, so much that she called me from the school wondering what happened. He is due for another walk next week. After 1 year of 1 Idebenone per day, we bumped it up to 2. Since then, he can climb on the school bus without using both rails or the lift, he spends hours outside in his snowsuit, he still rides his bike, jumps on the trampoline, swings on the swing set, and at his last Dr. appointment, he didn't use the Gower's Movement to stand up from the sitting position. While there, he also jumped 2 feet onto the table in the office. He actually made the Dr.'s jaw drop.
I must say, Joshua is on Deflazacort, Idebenone, and a multitude of supplements as well. The big change came with the Idebenone though because that was the last one added to the daily regimen. If you do have any specific questions, please ask. I will add to the bottom a couple of information sites and where we order it from. I hope this helps.
P.S. We received two letters from Joshua's doctors and I posted quotes from them in my notes on Facebook. If you would like to see them, my Facebook name is Naomi Clark-Desender.
Thanks for adding me to your friend's list. If you are on Facebook, there are many in your area if you would like to be in contact with them. You can look for me there at Naomi Clark-Desender.
It has been so many years since my son has taken any medication to slow down the progression. Because your boy is young they may want to put him on steroid medication for short term. Good news for you is that a cure is on the horizon from many years of research. Your son will probably benefit from this. Subscribe to "Quest Magazine" muscular dystrophy association's monthly magazine.
Thanks for your query. For boys with confirmed DMD (genetic test or muscle biopsy), it is standard now to give the corticosteroid prednisone (0.75mg per kg body weight per day). This is certainly not a cure but a treatment to slow down the secondary inflammation and course of the disease till a more substantive cure is discovered that might occur sooner than later.
My 26 year old son's heart has been affected by DMD. Be sure you or your loved one has echocardiogram every year. The doctors can detect the cardiac muscle begin to break down and medications can be introduced that can prevent congestive heart failure. Duchenne affects the cardiac muscle in the heart and the arteries. He takes cardiac meds and meds for congestive heart failure. When he was very young he took steroids but only for a short time. Mrs. Marilyn Saxon- Jason's mom.