Hello everyone,
I am a new mom with a boy of 7 years with Duchenne muscular dystrophy. We are from the Croatian small countries in Europe.
Apologize in advance for spelling errors.
We decided to introduce steroids and see all the most used Deflazacort.
Me interested why, because there is  nothing  other than him or because 
it is best to give to your boys.
I took him from the Lifetime Liquid Calcium, magnesium citrate, which has
400mg of calcium and 6.67 mcg of Vitamin D. Is it enough?
And what of  medical results you did before you have introduced steroids?
Thank you,
Andrea

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Liissa thank you for thinking of us. We got prescription for Deflazacort and I ordered and received tablets from UK.
We have not even started to take steroids because he had to do vaccination and now we will wait for about one month and than we will start using steroids.
His dosage for Deflazacort will be 27mg a day, he has 29kg. Is this ok?
Liisa what supplements you give to your son and how many mg of them?
Thank you,
Andrea
Connor is only 20 kg, so he's on 18 mg a day. I can only assume that dosage for your son sounds right.

Supplements:

800 mg Calcium
400 UI of Vitamin D3
Multivitamin

I was doing fish oil (omega 3) but found there are now suspicious of carcinogens in a lot of them. SO....since he eats fish, I just modified menus to have more fish (hopefully, minimize mercury intake by using farm raised fish).

He also takes Zantec since steroids are tough on the digestive tract. You should get hooked up with a pediatric gastroenterologist. Sorry, I know...too many specialist on our books for these guys. A lot of DMD kids have tummy troubles with the steroids. Connor also has issues with chronic constipation - another typical issue.

Hope this helps =)

Andrea Ruzic said:
Liissa thank you for thinking of us. We got prescription for Deflazacort and I ordered and received tablets from UK.
We have not even started to take steroids because he had to do vaccination and now we will wait for about one month and than we will start using steroids.
His dosage for Deflazacort will be 27mg a day, he has 29kg. Is this ok?
Liisa what supplements you give to your son and how many mg of them?
Thank you,
Andrea
Andrea,

I have an update for you on how Connor has been doing on the Deflazacort. He is doing GREAT!!! There is significant improvement in muscle strength and function. He's even climbing playground equipment like I've never seen him do before. So far, no additional behavioral issues nor weight gain. Everything is on the right track for him. We're significantly relieved. How is your boy doing?

Liisa
I'm mom with a boy Sasha 5 years old with Duchenne. We live in Russia and it's a pity but it's not enough information in our country about dystrophy. We went to Moscow and doctors recommend us prednizalone (0.05 mg to 1 KG, our dose 0.8 mg - each day during 3 months, then 3 month without steroids). Could you write me your doses and shedule of pill taking. Is it the same in prednizalone and deflazakort? they recommend prednizalone and in case it's not suitable go to deflezakort (it's hard to buy it here).
Sorry my language.
Hi Katerina,

My son is on Deflazacort at 0.9mg per kg body weight; he is 17 kgs and takes 15mg per day, in the morning.

I think that if we were using Prednisilone the dosage would be slightly less, typically 0.75mg per kg body weight, again taken every day.

Hope that helps for comparison.

Pozdrav

Ja i supruga imamo djecaka koji sad 21.02  puni  5godina koji ima Duchenovu distrofiju. Mi smo iz Bihaca BiH

Zanima nas vaša uskustva koje lijekove vas djecak koristi.

Nas djecak trenutno pije lijek pronizon  svaki drugi dan iza  9 sati obavili smo genetsku analiza kojoj je potvrđeno da nas djecak ima duchenov oblik.

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