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Hi Donna
Hope you and your boy are fine.From which supplier did you get your Idebenone stock?I need to compare with the prices Kirkman sent to me.Thanks and have a blessed day.
Hi,
Would ask you where you hold the tablet Idebenone, whether it is necessary to keep in the refrigerator?
Thanks
I order fromhttps://www.smartpowders.com/search.aspx?searchterm=idebenone if you are taking 900-1000 mg it comes out to $1.40 per day. I order enough for 4.5 months. good luck. I think you store at room temp.
I will be starting my son on 900mg / day starting as soon as I get my shipment after getting green light from his clinic doc yesterday.
I wanted to say "why the heck didn't we start him on high dosage when he was diagnosed 8 years ago?" but I bit my tongue. In related news, my doc told me that Santhera has reached out to about a new trial site in California just this week. Chances are we won't qualify because they always start with ambulant boys, but it does suggest that other trial sites are reporting progress.
Thanks Juan for starting this thread it really pushed me to get this done, I'd been thinking about it for some time. Thanks to Lisa and Donna for the recommendation on Smart Powders, you saved me about $1000/year.
-David
I will be starting my son on 900mg / day starting as soon as I get my shipment after getting green light from his clinic doc yesterday.
I wanted to say "why the heck didn't we start him on high dosage when he was diagnosed 8 years ago?" but I bit my tongue. In related news, my doc told me that Santhera has reached out to about a new trial site in California just this week. Chances are we won't qualify because they always start with ambulant boys, but it does suggest that other trial sites are reporting progress.
Thanks Juan for starting this thread it really pushed me to get this done, I'd been thinking about it for some time. Thanks to Lisa and Donna for the recommendation on Smart Powders, you saved me about $1000/year.
-David
David, thank you for beeing so accurate with some posts,not only here but in other discussions too.
We are all on the same wave, we are getting tubed right now and we don´t want to fall onto the wipeout, the end of the tube with the light is near, lets enjoy the tube while we are in it, maybe the wave keeps us on the tube longer but we will make it to the light with our kids (it´s called tandem, when you surf with someone else).
I am using 600mg daily and will raise depending on results, right now Juanito, my son is doing better for sure
Keep the faith your son will be better with this, be sure.!!
Best vibes for all parents trying so hard to make the difference.
JP.
Hi,I would like to know what's the dosing mg/kg for our kid,also what the different dosing Idebenone comes.
Does it make the difference with your kids? Thank you,
I'm just wondering if any of you have used Protandim and Idebenone together? Baylor is now 7, and 40 Lbs. We started him on Protandim when he was 2, and saw greater flexibility in his ankles. We eventually stopped using Protandim because it was so hard to get it into him because of the taste. I purchased Idebenone online from Swansonvitamins.com for a better price than most places. It is in 180 mg. capsules. I love the capsules because we can stir it into food. I've tried once to give it to Baylor, but found it doesn't stir into some things very well. So I'll have to experiment some more. It also doesn't taste bitter like Protandim, which makes it wonderful! After reading this discussion, I've vowed to try to get it in him tomorrow. He has a lot of sensory and rigid thinking issues, which has always made getting any type of supplement or meds in him a nightmare. In the last 6 months he has lost so much strength. He falls constantly, and is experiencing emotional breakdowns because of it. He now tells me he's not strong anymore, and just sobs. I'm so hoping Baylor shows improvement on Idebenone. I'll keep you posted. Oh, and I should mention that he has never been on Prednisone or Deflazacort, because he already has melt down issues. His deletions are exons 8-9, just for information sake.
Thanks all for the information!
Marla
The Idebenone I purchased from Swansonvitamins.com is ' PrimaForce '. I think I paid $34 for 80 capsules. I'm going to buy smart powders, as it seems to be a much better deal for how much we need to dose. Great info, thanks again =)
Dear Naomi,
Do you give green tea extract to your son as well? If you do, please could you tell me where you order it from?
Do you think Idebenone can work even without steroides?
Thank you in advance for your answer.
Keren, mother of a 3.8 years old with DMD.
Joshua's mom said:
Joshua has been using Idebenone for 2 years now. He is 8 years old and just graduated to a bigger bike. We did the 6 minute walk tests before he started, 222, after 6 months of a single dose, 397, and after 1 year of a double dose, 577. He hasn't used the Gower's in more than a year. His respiratory is normal and his school academics are now normal. Physiotherapy became easier for the physiotherapist, and we almost lost our school bus because Joshua doesn't need to use the lift at all anymore. We still have it only because of the extra entrance steps.
Naomi
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