How in the world does a parent get a prescription for losartan for their child?
Our son's cardiologist isn't ready to give it to us, nor is his neurologist until there is more proven evidence that this drug will help a child with DMD and cause no severe side effects.
What do I need to do? I have shared every recent study published with them, reminded clinicians and specialist this drug has a good track record ( is safe used in children), even reminded them I am capable of taking a blood pressure on my son and will be complaint with blood work drawn per protocol.
Tina

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If you've shown them everything and they still won't give than the only way I can see getting it is by finding a different cardiologist that will.
I asked my son's doctor what he would do with idebenone and losartan if it were his son. Given that my son is almost ten, fully ambulatory and with no symptoms of cardiac difficulty, he recommended waiting until the more definitive human data on both come out in about a year.
I wish I had advice for you here. It is so hard to convince doctors to try new things; even though losartan is already being used often for high blood pressure. I was very interested in trying the drug with Bradley because I had heard that it was beneficial for increased strength in DMD. It is also supposed to help Marfan syndrome which is interesting since Bradley's cousin and my brother in law has Marfan syndrome. Bradley's cousin is in a losartan study for her marfan syndrome at this time. The interesting part was that it could help two of my mother in law's grandchildren.

I think Beverly DeVergillo's son is on losartan if I remember correctly. Maybe she would have some advice for you.
I started Daniel on Losartan 2 weeks ago. Will be watching for any changes, although I don't really expect ot see anything dramatic. Hopefully it will slow down the fibrosis. Haven't seen any negative side effects since starting.
Tina,
I did not have a problem getting our son on Losartan. He had been on Enalapril since he was 10 (now he is 15), and our last year visit to the cardiologist I was ready to really fight to put him on Losartan, but the cardiologist already beat me to it and prescribed it without us even asking for it. He was on 25 mg for 6 months and now at his last checkup (1 month ago) he increased it to the correct dosage for his age/weight 50mg. By the way, he goes to AI Dupont Hospital in Delaware and they are one-stop shopping like Cincinnati (one phone call and they coordinate all doctors for the same day-its really nice).
Beverly
Tina,

Which cardiologist do you see? Tyler sees Dr. Cockerham at CNMC and he is the one that prescribed it for us. At first he didn't want to and said to wait, but I e-mailed him a specific article that I got from the MDA website and he changed his mind and decided to write one for him.

Mark is about 7, right? Tyler was 8 when he started taking it and I kept pointing out the need to start it BEFORE things happen with his heart . (If I recall, the study I'm referring to started the boys on Losartan at age 9.)

Tyler does have frequent PVCs (that have been found to be "benign" at the moment), so I did stress this as a potential problem and reason to start Losartan sooner rather than later. I'm sure this was in our favor in getting the prescription.

It couldn't hurt to try and see Dr. Cocherham next time if you haven't already, or have you doctor contact him so he can verify that he has prescribed it to a younger patient. Feel free to mention Tyler; he has had no negative side effect from taking it.

Nicki
I work at a pediatric hospital in Indianapolis as a respiratory therapist. My son is only 3 (with DMD), and a cardiologist I work with in the ICU asked me out of the blue if I had heard about the study with lorsartan and the work with marfans. He was very excited about it and had started a few of his DMD patients on it (all older). His philosophy is the same: it has been proven safe in children, and why wait when it could help prevent? Our neurologist did not agree and wanted more info. At this point, I am okay waiting, but I don't understand why researchers are not starting clinical trials for DMD now. This is not a new drug, and it has been proven safe in children. It should be an easier and faster trial. This is the first I have heard of other parents asking for it and I was excited someone else had the same view. In the research I have found, the viewpoint from the MDA and PPMD is the same as your cardiologist: wait. But I am all for off label drug use if it has been safe.
My sons cardiologist is the one who recommended giving him losartin and he has had no side effects and has been on it over a year up to 25 mg. now and his heart looks great and his blood pressure stays at a normal low which is what the doctor wants to see, so I would look for another doctor.

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