[MelodieAB]

Hi I am a mother of a 10 yr old who was diagnosed 3 years ago but showed some signs since probably around 5. I live in Canada. Our system does not prescribe anything for FA specifically. We went to Pensilvania to see a research doctor who is familiar with about 300 cases. He recommended Idebenone – it used to be prescribed in Canada and the US but since has been dropped due to “insufficient evidence of efficacy”. But if you look at the research in detail it is either a little successful or not at all in helping the cardiac problems of FA. I think it may have to do with how far along the test subject was in their progression and how much was being prescribed. If your child is the one that responds it’s worth it since today its available on the market at a lot less than it was when it was a prescription drug. The supply is drying out in North America so the doctor recommended just going with
CoQ10 which is similar in function but a larger molecule and may not be able to cross the blood brain barrier. It still would be able to target the heart. At 7 our son had a very slight heart condition and the doctor said he wouldn’t think it would work but if we’d want to have heart specific drugs he’d be willing to prescribe them. We declined. We gave him huge doses of idebenone ( I think 2 grams ) since the research done shows the most promise with large doses. We also gave Vit E, Omega 3, D-Ribose, ALCAR, NAC and Vit B1. His heart condition was improved after 6 months to on the good side of borderline and has been resting there ever since. Our doctor was very impressed and said it was significant and definitely not a function of margin of error in the exams. The other thing we are doing is exercise – I do some pilates with him and generally keep him doing things. I have taught him how to do certain movements he simply couldn’t coordinate since they include a lot of muscle transitions. He’s improved in some ways. I’d guess most of the improvement is because he’s catching up developmentally a bit and his core is stronger so he doesn’t tip over every time he tries to change direction when running around.