I've read that DFZ can cause stomach upset and pain, but luckily my son has had not such problems over nearly 6 years on it. Perhaps it is because we always give it at meal time. They say eating a small snack with the meds may help. I have no experience with Idebenone.
I've also heard that many boys with DMD have problems with constipation which can be very painful too.
Poor little guy. Good luck!
my son had horrible abdominal pains at mid-nights months ago.he is 6-1/2 and is on DFZ and idebenone(150mg) for one year. we gave him idebenone before sleep and i think idebenone ,specially high dozes could be the reason.use it with each meal and i suggest decrease doze.
now we give him 300mg idebenone at the morning and afternoon with each meal and fortunately there is no pain any more!
Our nutritionist does not recommend Idebenone. He suggests CoQ10 made by a specific Japanese process that is more bioavailable and non-synthetic.
my son used to have daily abdominal pain, swollen tummy,constipated and pale stools(food not getting properly digested and no goodness absorbed).We changed his diet ,fresh food where possible and low fat.I also give him a glass of raw milk with his dinner to help digest fatty foods as you need some good fats.This helps him tremendously as does fresh pineapple and papaya.He is never constipated and his stools look how they should.He also takes idebenone and i have seen no ill effectss.He had the tummy problems before he started on idebenone.If we are put and he has chips/fries or something fatty, he will get cramps later in the day.