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    • #11319
      Natalieprice
      Participant

      Hi just wondering if anyone could give me some advice !! My son was diagnosed with Fa scoliosis and cardiomyopathy 12 months ago , he is 9 year old . We live in Liverpool uk . He is currently taking vitamin E and ubicor. Is this the same type of medication prescribed to most patients of Fa ? Thank you .

    • #11332

      Hi there Natalie.

      Don’t be discouraged if you don’t get a response right away. Since the forum just launched, we will be waiting for other parents to sign up too! This is EXACTLY what this forum is for! Thank you for your question.

    • #11498
      MelodieAB
      Participant

      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.

      • #11503
        Matt Lafleur
        Keymaster

        I believe that CoQ10 has had some huge advantages for you! I’d stick to that. It’s important to note that I’m not a doctor, but I can tell you what I’d do based on my experience with FA. Like you said, there’s no medication specifically for FA, so I’d see if your child is presenting any symptoms you’d like to address. In my own case, I take medicine that helps suppress my cough. Sorry, I know that’s not much advice.

    • #11508
      Natalieprice
      Participant

      Thanks for replying ,much appreciated 👍🏽

    • #11702
      Jaq
      Participant

      Hi Natalie, we also live in Liverpool and my daughter also had scoliosis and was diagnosed with FA and was given Vitamin E and Q10, we were told there was some benefit shown from smaller studies so opted for this.

    • #11706
      Natalieprice
      Participant

      Hi jaq thank you for replying!! Can I ask how old your daughter is please

    • #11708
      Jaq
      Participant

      Hi Natalie, she is 17 now but was diagnosed 3 years ago. We initially thought she just had scoliosis, but at the same time her balance seem to deteriorate and when we questioned things they did some more tests and diagnosed FA. So it was devastating as prior to this she had been healthy and showed no signs of any problems. How old was your son when he was diagnosed? Was it recent?

    • #11698
      mercedes
      Participant

      Hello¡ I am a mother of an almost 15 years girl diagnosticated 2 year ago. She is taking Idebenona, Vitamine B1 and Vitamine E.
      Idebedone is not available now in Spain instead of it the doctor recommend Q10 (we are living now in USA for 3 years) but we get a Farmacy in Spain wich prepare the Idebenone pills for us and we brought with us a lot of them. She had spinal surgery 18 months ago and she is still walking and doing everything by herself.
      Thanks a lot for creating this forum and sorry for my English…is not good enough yet.

      • #11730
        Matt Lafleur
        Keymaster

        Your English is fantastic Mercedes. I wish I could type in another language!

        I have been on both idebenone and CoQ10 at different points. I didn’t notice a difference between the two. Have you?

    • #11709
      Natalieprice
      Participant

      It’s just heart breaking , my lil boy been diagnosed a year now he was 7 when we found out his spine has no curved to 51 degrees, we have an appointment tomorrow to find out if he need spinal rods 😢 x

      • #11729
        Matt Lafleur
        Keymaster

        Best of luck Natalie. What is your son’s name? Please keep us posted.

    • #11731
      mercedes
      Participant

      Hi¡ My daughter always take Idebenone, and we noticed a lot of improve in her energy…
      Natalie, keep calm with surgery, its hard but in a cople of months kids are totally recovered..and I thing (personal opinion) the sooner the better, my girl is happy for that, he was wearing brace for almost 3 years 24 hours per day..so now as a teeneger she feels more confident.. Good luck and Hope¡

    • #14530
      Brittney Piper
      Participant

      My two daughters been diagnosed 5 years ago and they were both taking She is taking Idebenona but many at times they cried to an extend that i will rush to the doctor with them most especially when the doctor can’t show up due to his time schedule with other patients. They both had spinal code problem and this my doctor gave me a Medical Marijuana doctor contact that is should contact her that she can help whom i contacted and explain the situation eventually she gave me some CBD oil to apply straight on the spinal code and from that same day,the pains disappeared. This oil he sent came with a booklet. That was fantastic. I recommend the Oil to be use if your children are having the same issue.

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