Luc is 2 and a half and there is no chance of asking him to swallow the tablets.

The predisinone is terribly bitter and I wondered if anyone had some ideas about how to disguise the taste. I normally hide it in his food but still he spits it out mostly.

He also has a tendency to get extreme mucus where the rest of us get sinus problems. The mucus goes straight to his lungs, does anyone else experience this at all ?

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We don't give Seth steroids yet, but he takes Idebenone and Protandim and they're both pretty bitter, so we we crush them and add them to melted chocolate. Then I pour it into ice-cube trays (the rubbery/silicone ones are best as it's easier to get the chocolates out) and put them in the fridge to set. He eats them no problem and I've been told more than once that there's something about chocolate and a cold temperature that 'disguises' bitter flavours. We chase it with a glug of milk just to be sure.

It might also be worth seeing if the steroid comes in liquid form? I know some steroids do. Then you could syringe it into his mouth quickly and then follow with something nice to eat/drink.

Hope this helps a bit anyway.

 

Yes, it does come in a liquid! Prednisone in liquid form is called Prednisolone and can be mixed with flavorings at the pharmacy.

Dear Lisa,

Would you like to tell me if what benefit Idebenone is bringing?

My nephew (6years) got diagnosis a month ago and we are trying to inform ourselves. At what age you started using it?

Thank you in advance,

tanja



lisa burke said:

We don't give Seth steroids yet, but he takes Idebenone and Protandim and they're both pretty bitter, so we we crush them and add them to melted chocolate. Then I pour it into ice-cube trays (the rubbery/silicone ones are best as it's easier to get the chocolates out) and put them in the fridge to set. He eats them no problem and I've been told more than once that there's something about chocolate and a cold temperature that 'disguises' bitter flavours. We chase it with a glug of milk just to be sure.

It might also be worth seeing if the steroid comes in liquid form? I know some steroids do. Then you could syringe it into his mouth quickly and then follow with something nice to eat/drink.

Hope this helps a bit anyway.

 

Hi Tanja,

It's hard to say what benefit Idebenone is bringing, as Seth's been on it since he was so little. He's classed as 'doing well' and apart from not being able to run as fast as his peers or do stairs very well he's pretty much able to keep up with everyone else. Since starting it he's been able to jump a little way with both feet, but this could just be coincidence as he's growing all the time.

Trials have shown benefit to respiritory function in older children on Idebenone and in other trials (not for DMD) it has been proven to be safe in doses up to 900mg. It has been approved for treatment in Fredrich's Ataxia.

Because it seems to be safe and we've seen no side-effects (apart from bright yellow wee at times!) we're happy to continue as Seth seems to be doing well and it may (or may not) be in part to do with the Idebenone.

I'm sorry if this doesn't help much!

Dear Lisa,

thank you so much.

Kind regards,

Tanja

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