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Hi everybody,
I think that Idebenone is worth the try.It is really good and very positive effects are expected to see soon.I was thinking that the positive effects Joshua mom was talking about are biased,but I found that she is truthful in her notices.I am not sure if every body react the same,but again it gives at least more energy.
Hi There Joshuas Mom! I have a few questions regarding idebenone. Are Joshua's doctors recommending this supplement? How much idebenone are you supposed to administer? If it is per body wieght, please give me the parameters. Finally, are you seeing any changes in Joshua since he has taken this supplement? Thanks for your time in answering my questions. I have a 26 year old son with DMD. Still and will always search for anything that may help my son.
Heidi Miller
Hi Heidi,
Joshua's neuro was who recommended Idebenone in Catena form. Catena is a medication here in Canada, but only approved for Fredrich's Ataxia. When speaking with Catena, they had said it is Idebenone and recommended ordering it from Smart Nutrition or Kirkman. We order it from Kirkman because of the price difference. Joshua is 8 and weighs approx. 65lbs. He takes 1 capsule twice per day. The parameters I don't know specifically. His neuro moved to Sacramento last year so you should be able to talk to him. His name is Dr. Skalsky.
There have been dramatic changes since he started Idebenone. Before he started he did the 6 minute walk test. He walked 262 metres. After 6 months on one per day; 397 metres. After 1 year of 1 capsule twice per day; 522 metres. His academics went up, he didn't use the lift on the school bus anymore, and he stopped using the Gower's. At our last appointment they considered him 'normal' but does have a slight tightening of the achilles tendons.
After we started, there was another boy/man who is 18 and started taking it as well. He was able to not use his chair full time and move when he was sitting much easier without any help.
Dr. Skalsky is a Duchenne advocate for a specialist. He knows more than any Dr. we've had in his field. You'll notice the link and he is always willing to answer questions. He still keeps in contact with us as well. I hope this helps. If you have any other questions, you are more than welcome to ask. To ask more directly, you can find me on Facebook as well under Naomi-Clark Desender.
Take care,
Naomi
Hi Naomi,
Thanks for the information. Could you please tell me the amount of idebenone in each capsule? I also need to know what form the idebenone comes in. Is it a pill that can b crushed? If it is a capsule, can it b taken apart to get to the med easily? Mitch has a PEG tube. He does not eat or drink by mouth.. All meds, etc are administered through a tube in his stomach. Thanks again for your help. Take care.
Heidi
Joshua's mom said:
Hi Heidi,
Joshua's neuro was who recommended Idebenone in Catena form. Catena is a medication here in Canada, but only approved for Fredrich's Ataxia. When speaking with Catena, they had said it is Idebenone and recommended ordering it from Smart Nutrition or Kirkman. We order it from Kirkman because of the price difference. Joshua is 8 and weighs approx. 65lbs. He takes 1 capsule twice per day. The parameters I don't know specifically. His neuro moved to Sacramento last year so you should be able to talk to him. His name is Dr. Skalsky.
There have been dramatic changes since he started Idebenone. Before he started he did the 6 minute walk test. He walked 262 metres. After 6 months on one per day; 397 metres. After 1 year of 1 capsule twice per day; 522 metres. His academics went up, he didn't use the lift on the school bus anymore, and he stopped using the Gower's. At our last appointment they considered him 'normal' but does have a slight tightening of the achilles tendons.
After we started, there was another boy/man who is 18 and started taking it as well. He was able to not use his chair full time and move when he was sitting much easier without any help.
Dr. Skalsky is a Duchenne advocate for a specialist. He knows more than any Dr. we've had in his field. You'll notice the link and he is always willing to answer questions. He still keeps in contact with us as well. I hope this helps. If you have any other questions, you are more than welcome to ask. To ask more directly, you can find me on Facebook as well under Naomi-Clark Desender.
Take care,
Naomi
Hi Heidi,
Each capsule is 150mg. They are capsules so you can take them apart easily like most.
Take care,
Naomi
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