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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best of luck wainaina,it can only help,there is no detrimental effects,

My son has been on it.It is very helpful

Hello

I thinking to take my soon to Idebenone. He is almost 9, how many mg. I need to take. He has 30 kg.
We are in Europe and I have found dealers close to us.
But I'm not sure what dose of this product to order and that is enough for my son.
Thanks in advance

Hi Andrea,

I would say that 600 (200 mg x 3 capsules) is okay.Kirkman is the best company to buy from

.I trust them,as well most families.They can send it to you by mail with exact date.

I think you will be very happy to use Idebenone



Moein said:

Hi Andrea,

I would say that 600 (200 mg x 3 capsules) is okay.Kirkman is the best company to buy from

.I trust them,as well most families.They can send it to you by mail with exact date.

I think you will be very happy to use Idebenone

Moein thank you for answer.

I thought to begin to take 150 mg, but I see that you recommended much more. I really have no experience with this product and dosage, so I like to hear other experiences. Does they  have a capsule of 200mg? Can we write here  the price of the product to be compared with the price that my distibuter give me for the capsules of 150 mg?

Thanks

Andrea,

I give my 6 year old son 450 mg and he is okay with that.As for the clinical trial,boys from 10-18 are given 900 mg,therefore I suggest 600 mg.No they don't have 200 mg,but you can give him 300 mg twice daily (2 capsules 150mg in the morning,2 capsules 150 mg before bedtime.I strongly recommend this supplement (drug).

Cognitive improvement beside muscular is expected to be seen hopefully.Don't worry and start

.

The price for 150 mg ,150 capsules is 85 USD+TAX+SHIPMENT

See the link below:

http://kirkmanlabs.com/ProductKirkman/64/1/Idebenone%20150%20mg%20-...

Andrea,

150 mg for a 9 year old DMD will do nothing,so I absolutely don't recommend it.

150mg may not do too much for your son, but ween him up to amount you want him on.  Treat supplements like you would a medication.  Joshua was 6 when he started with 150 then moved up to 2 x 150 6 months later.

Have you all heard of getting it from smartpowders.com  they sell primaforce for about 0.26 cents per capsule.  I have a friend who has fredricks ataxia, was on the study at UCLA and says it helps.  what do you all think.  Saw our MD doc on wednesday and he said for my son who weighs 113 lbs to take 900 mg of idebenone or CoQ10.  what do you all think.?

 

Hi Naomi ,

 

It's very informative to read yr posts. Idebenone seems to be really working good for  little Joshua. My little one is  4 yrs 4 mts old and currently weighs appx 37 pounds = 14.5 kgs , He was diagonised with DMD when he was 18 mts old in November 2008 , He has 52 to 54 as his missing exons and is eligible for skipping of exon 55 .

 

When he turned 2 yrs we started him on various natrural supplements( dosages are what he takes now, Were less when we stared  )  as under

 

COQ10 - 120 MG - 1 capsule at noon daily
Lecithin 1200 mg - 1 Capsule at noon daily
Wheat germ oil - 340 mg - 1 capsule at noon daily
Vitamin E 400 IU = 268 mg - D- alpha tocopherol - 1 capsule daily at noon
Calcium - 300 mg - I tablet at noon daily

 

Below taken in the evening or night before bed  daily

Magnesium - 32.5 mg - I tablet , with magnesium orotate - 500 mg in same tablet
Vitamin B12 - 1000 mcg
Selenium - ( as selenium yeast -  50 mcg ) - 1 capsule
Children mutivitamin chewable tablet - 1

All above purchased from  a UK based company - www.HealthAid.co.uk except selenium which is bought from Alltech USA - www.alltech.com  , www.Sel-Plex.com

 

We started above supplements for Khush when we came across this site and also exchanged some emails with Kathleen Hanson mentioned there .

 

http://www.doctoryourself.com/dystrophy.html

 

I read many +ve comments and experiences abt idebenone . How can I start it for my son , I mean what dosage can be safe along with some  theurepatic benefits expected soon . We would like to keep him out of steroids ( considering side effetcs ) as long as possible

 

Have a nice week end

 

Would appreciate your comments at earliest

 

Rgds Ambrish ( from Mumbai - India )

Joshua's mom said:
150mg may not do too much for your son, but ween him up to amount you want him on.  Treat supplements like you would a medication.  Joshua was 6 when he started with 150 then moved up to 2 x 150 6 months later.

Hi Ambrish,

 

Idebenone would replace coQ10 since it is a "super" coQ10.  Although, as Ofelia has mentioned in the past, for your son to be eligible for exon skipping, idebenone is not allowed to be used because of conflicts. If you do want to start Idebenone, I, personally, would wean him onto it, starting with 150mg and working your way up. Joshua is taking 12mg of Deflazacort and 300mg of Idebenone daily.  We will soon bump up the Idebenone again.

 

When Joshua started Idebenone, within a month, or less, he was; more energy with daily activity; more cognitively aware; his legs wouldn't become so hard and were more easily massaged; physio was easier (We didn't tell the physiotherapist he had started a new supplement and received a phone call from them regarding seeing and feeling a drastic difference.).  Within 6 months he stopped using the Gower's Movement. 

 

Before he started Idebenone, he did the 6 minute walk test with dramatic differences before and after increases.  You probably read that earlier.  Like I said before, treat it like a medication and work your way up.  If you can, do the 6 minute walk test before starting, after, and after each increase.  Ask questions no matter how complicated or simple they may feel.  It's your son's life!

 

Naomi

 

Ambrish Kapadia said:

Hi Naomi ,

 

It's very informative to read yr posts. Idebenone seems to be really working good for  little Joshua. My little one is  4 yrs 4 mts old and currently weighs appx 37 pounds = 14.5 kgs , He was diagonised with DMD when he was 18 mts old in November 2008 , He has 52 to 54 as his missing exons and is eligible for skipping of exon 55 .

 

When he turned 2 yrs we started him on various natrural supplements( dosages are what he takes now, Were less when we stared  )  as under

 

COQ10 - 120 MG - 1 capsule at noon daily
Lecithin 1200 mg - 1 Capsule at noon daily
Wheat germ oil - 340 mg - 1 capsule at noon daily
Vitamin E 400 IU = 268 mg - D- alpha tocopherol - 1 capsule daily at noon
Calcium - 300 mg - I tablet at noon daily

 

Below taken in the evening or night before bed  daily

Magnesium - 32.5 mg - I tablet , with magnesium orotate - 500 mg in same tablet
Vitamin B12 - 1000 mcg
Selenium - ( as selenium yeast -  50 mcg ) - 1 capsule
Children mutivitamin chewable tablet - 1

All above purchased from  a UK based company - www.HealthAid.co.uk except selenium which is bought from Alltech USA - www.alltech.com  , www.Sel-Plex.com

 

We started above supplements for Khush when we came across this site and also exchanged some emails with Kathleen Hanson mentioned there .

 

http://www.doctoryourself.com/dystrophy.html

 

I read many +ve comments and experiences abt idebenone . How can I start it for my son , I mean what dosage can be safe along with some  theurepatic benefits expected soon . We would like to keep him out of steroids ( considering side effetcs ) as long as possible

 

Have a nice week end

 

Would appreciate your comments at earliest

 

Rgds Ambrish ( from Mumbai - India )

Joshua's mom said:
150mg may not do too much for your son, but ween him up to amount you want him on.  Treat supplements like you would a medication.  Joshua was 6 when he started with 150 then moved up to 2 x 150 6 months later.

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