Hi There, I would like to know if anyone is using Idebenone in boys with DMD, and if so, is there positive results, or side effects etc,
Kind regards
Maxine Strydom

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Hi Wainaina,

We started Joshua with 150mg for 6 months, then moved up to 150mg twice per day.  Here, in Canada, it is a medication for FA so we cannot buy Idebenone here.  We order it from Kirkman, but before Kirkman, we ordered from Smart Nutrition.  Both were recommended by his neurogeneticist and Santhera.  We did the 6 min. walk test before he started Idebenone and he walked 262 metres.  After 6 months of the single dose he walked 397 metres.  After 1 year of the double dose he walked 522 metres and stopped the Gower's Maneuver.  I do recommend it, but do your research if you feel you need to.  I can post sites, and have before, if you want.  I hope this helps.

 

Naomi

 

 

 


wainaina muiruri said:

Hi,Joshua's mom,

 

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.

 

Regards

Wainaina.

Hi,Joshua's Mom,

 

Thanks for that precious info.I see a number of parents have recommended both Kirkman and Smart Nutrition and i think by buying from either them i will be in good company.Let me visit their sites and see the prices at which the products go for as well as their procedures of shipment.Thanks again and have a blessed day.

Regards

Wainaina

Hi,Joshua's Mom,

I have visited Smart Nutrition site.Also wrote to them and they mailed back;kind of curt,though,like they may not entertain too many questions.Therefore i visited the Kirkman website and was quite pleased to see they have a distributor in South Africa.Unfortunately their S.Africa contact is not answering all mail so am not sure if they are in operation or not.I have mailed five emails to the Kirkman head office to check on the status of their S.Africa outlet and availability of Idebenone,but not even one mail has been answered.Guess it was not my week this one.Have a blessed week.

Regards

Wainaina

 

 

 

 


Joshua's mom said:

Hi Wainaina,

We started Joshua with 150mg for 6 months, then moved up to 150mg twice per day.  Here, in Canada, it is a medication for FA so we cannot buy Idebenone here.  We order it from Kirkman, but before Kirkman, we ordered from Smart Nutrition.  Both were recommended by his neurogeneticist and Santhera.  We did the 6 min. walk test before he started Idebenone and he walked 262 metres.  After 6 months of the single dose he walked 397 metres.  After 1 year of the double dose he walked 522 metres and stopped the Gower's Maneuver.  I do recommend it, but do your research if you feel you need to.  I can post sites, and have before, if you want.  I hope this helps.

 

Naomi

 

 

 


wainaina muiruri said:

Hi,Joshua's mom,

 

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.

 

Regards

Wainaina.

Hi Wainaina,

 

We also have a distributor in Canada, but we still order from the US outlet.  The cost is less, believe it or not.  Smart Nutrition gets to the point and aren't very curt, but they send everything as a gift so you will save on shipping.  Kirkman costs less but you do pay for shipping.  If you deal with the head office alone, you should be able to get a response from either of them quickly.  I hope this helps.  Keep me updated.

 

Take care,

Naomi

wainaina muiruri said:

Hi,Joshua's Mom,

I have visited Smart Nutrition site.Also wrote to them and they mailed back;kind of curt,though,like they may not entertain too many questions.Therefore i visited the Kirkman website and was quite pleased to see they have a distributor in South Africa.Unfortunately their S.Africa contact is not answering all mail so am not sure if they are in operation or not.I have mailed five emails to the Kirkman head office to check on the status of their S.Africa outlet and availability of Idebenone,but not even one mail has been answered.Guess it was not my week this one.Have a blessed week.

Regards

Wainaina

 

 

 

 


Joshua's mom said:

Hi Wainaina,

We started Joshua with 150mg for 6 months, then moved up to 150mg twice per day.  Here, in Canada, it is a medication for FA so we cannot buy Idebenone here.  We order it from Kirkman, but before Kirkman, we ordered from Smart Nutrition.  Both were recommended by his neurogeneticist and Santhera.  We did the 6 min. walk test before he started Idebenone and he walked 262 metres.  After 6 months of the single dose he walked 397 metres.  After 1 year of the double dose he walked 522 metres and stopped the Gower's Maneuver.  I do recommend it, but do your research if you feel you need to.  I can post sites, and have before, if you want.  I hope this helps.

 

Naomi

 

 

 


wainaina muiruri said:

Hi,Joshua's mom,

 

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.

 

Regards

Wainaina.

I just ordered for the first time from Kirkman and they answered my questions quickly and were very helpful.  Looking forward to getting my son on idebenone next week.

Thanks for everyone's help/insight!

Keith

 


Joshua's mom said:

Hi Wainaina,

 

We also have a distributor in Canada, but we still order from the US outlet.  The cost is less, believe it or not.  Smart Nutrition gets to the point and aren't very curt, but they send everything as a gift so you will save on shipping.  Kirkman costs less but you do pay for shipping.  If you deal with the head office alone, you should be able to get a response from either of them quickly.  I hope this helps.  Keep me updated.

 

Take care,

Naomi

wainaina muiruri said:

Hi,Joshua's Mom,

I have visited Smart Nutrition site.Also wrote to them and they mailed back;kind of curt,though,like they may not entertain too many questions.Therefore i visited the Kirkman website and was quite pleased to see they have a distributor in South Africa.Unfortunately their S.Africa contact is not answering all mail so am not sure if they are in operation or not.I have mailed five emails to the Kirkman head office to check on the status of their S.Africa outlet and availability of Idebenone,but not even one mail has been answered.Guess it was not my week this one.Have a blessed week.

Regards

Wainaina

 

 

 

 


Joshua's mom said:

Hi Wainaina,

We started Joshua with 150mg for 6 months, then moved up to 150mg twice per day.  Here, in Canada, it is a medication for FA so we cannot buy Idebenone here.  We order it from Kirkman, but before Kirkman, we ordered from Smart Nutrition.  Both were recommended by his neurogeneticist and Santhera.  We did the 6 min. walk test before he started Idebenone and he walked 262 metres.  After 6 months of the single dose he walked 397 metres.  After 1 year of the double dose he walked 522 metres and stopped the Gower's Maneuver.  I do recommend it, but do your research if you feel you need to.  I can post sites, and have before, if you want.  I hope this helps.

 

Naomi

 

 

 


wainaina muiruri said:

Hi,Joshua's mom,

 

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.

 

Regards

Wainaina.

By the way,if you order 10 bottles and more from Kirkman,you will get 25% off

Hi,Joshua's mom

Good news to hear that with Kirkman i might save on shipment charges.Let me get back to them for more info as i also check out  the benefits accruing from buying more packets at a go,economies of scale.I will keep you posted as things unfold.Thanks and have a blessed week.

Regards

Wainaina


Wainaina,

Can you post the outcome when ur son tries Idebenone. I would like to know if it has the same effect it did on Joshua.
Thank you

Yeah, i will keep you informed on my boy's response.I am pretty anxious too to see how things will go.I am also in the process of getting him started on Deflazacort,but i am not sure whether to start him on the steroids and Idebenone at the same time.

Thank you.

Joshua started Deflazacort at the age of 3.  If I had known about Idebenone way back then, that would have been the first supplement we would have added.  He's on many other supplements as well, but that definitely would have been the first.

 

Naomi

Idebenone seems to be pretty strong from what info i have managed to garner so far.I am right now working on getting a prescription,the guy at Smart Nutrition tells me that too helps in easing movement of the package.And you were right;they asked who referred me to them and once i gave your name and PPMD's,they have been very forthcoming with info.Thanks and good day.

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