When Santhera calls, they don't sound surprised, but all you can hear is typing in the background. They ask questions, different ones each time, and give brief updates and information regarding the availability. Once it is approved in Canada, they are going to do what they can regarding the government with the exception drug status coverage. All of Joshua's medical information since he started idebenone is being sent to the Cochrane Review.
Just curious - has anyone been able to get Santhera version of idebenone? I'm a bit leary about purchasing idebonene from some of the internet sites. I want to be sure my son's getting a pure and high-quality version of the supplement.
Joshua's mom said:
If many of you have questions for Santhera, they are really easy to talk to! You can e-mail or phone them. They call me every 6 months just to learn the effects it has on Joshua.
I buy it from Kirkman
I did at last hear from Santhera about safety of Catena at 900mg/day. They gave me a long legal response that amounts to "we won't make any statements about safety or efficacy until Phase III is complete."
This was the response I expected, but it kinda makes you wonder why they even have Phase I and II if not to make precisely such statements about safety before they make statements about efficacy.
I'll never understand this industry.
Clare, thats interesting.. as our son Dylan, who is also 6 was showing Gower sign before starting steroids(in Jan this year), but since starting steroids, he uses one hand to push up, with a wide stance on both feet!! So that is a good comparision between steroids and idebenone?... Definitely looks like adebenone has a positive effect, maybe without side effects? Damien
I am Wainaina from Nairobi.I hope you and little Joshua are doing fine.Your last post to this discussion is pretty interesting.At what dose did you start Joshua?I have established there is no one stocking Ideb in my town,and i am considering importing it.I see a good number of parents have recommended sourcing from Kirkman's,and i guess that is what i may need to do too.