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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Hi Andrea,
Sorry your son has Duchenne, it can be a difficult disease to manage sometimes. Welcome to PPMD, hopefully you will find the support and information you require to maintain your son's health and your well being too. We started our son out with Prednisone just after diagnosis, at age 9, he is 11 years old now. He had weight gain of 10lbs (grew 2 inches in height too) the first year. Second year on prednisone he continued to gain weight so we switched to Deflazacort to see if that would help. It did immediately. His appetite decreased by 50% the first week he started on Deflazacort. Less weight is important because often that can prolong walking and puts less stress on the bones. Not sure about vitamin supplements, we just give one children's multi-vitamin daily. As far as medical results before starting steriods- we started upon advice of three DMD neurologists and DNA testing. DNA testing wasn't required to start streiods, it was done as a standard proceedure here in the usa.

hope this helps you!
cheryl
Andrea,

Very sorry to hear that your son has DMD... It is good though that you found PPMD and can get some advice here!
My son is also 7 and takes 18 mg Deflazacort daily. He hasn't gained weight in the sense that Prednisone can affect weight gain.
He also takes 1000 mg calcium every couple of days. He drinks milk, eats cheese and other dairy products, so we are trying to keep him on a healthy diet where he doesn't need too much vitamins and supplements. He also takes 2000 iu of Vitamin D3 almost daily so that he can absorb the calcium.
I'm not familiar with the difference in measurements, but I don't believe that 400 mg of calcium would be enough for your son's bones. You may want to discuss with a doctor.
Nicolas has been on steroids just after his diagnosis when he was 5 years old. It has definitely stabalized him, but other than that, I am also looking at the long term beneficial effects for his lungs and heart. I know there are side effects, but so far so good for Nicolas. No side effects yet.
We're beginning Connor's treatment with Deflazacort in a week. Hang in there. I'll keep you posted as to how Connor is doing.
Liisa, are you starting regular dose or lower? Connor is 4 now right?

Liisa Underwood said:
We're beginning Connor's treatment with Deflazacort in a week. Hang in there. I'll keep you posted as to how Connor is doing.
He'll be starting a daily dose of 18 mg. He's 4, and squared - 41 pounds and 41 inches tall LOL

Ofelia Marin said:
Liisa, are you starting regular dose or lower? Connor is 4 now right?

Liisa Underwood said:
We're beginning Connor's treatment with Deflazacort in a week. Hang in there. I'll keep you posted as to how Connor is doing.
Thank you all for the answers.

Liisa please write me how your son is accepted steroids, what his mood, what do you think about them?
Everything about steroids are interested me.
Thanks in advance
Andrea
I spoke with our neuroped. yesterday and she told us to come to the hospital on Monday.
We are going to start using steroids.
I told her that I want Deflazacort and she smile and tell me that all steroids are the same, is this true?
She want my boy in hospital 3 days, is that necessary,?
Are you do the same thing when you start to take steroids?
Thank you,
Andrea
Hi Andrea,

Struggling to get Deflazacort happens here in the usa too.

Although Deflazacort is a derivative of Prednisone they are NOT exactically the same. They are alike, however deflazacort is missing an ingredient (that prednisone has) which can put less strain on your son's muscles & bones because it won't cause your son to over eat. Often, Predinsone causes people to gain weight from over eating. If you want deflazacort for your son you will probably have to insist.

cheryl

Did she say what the 3 day hospital stay is for? That isn't typical here in USA.

Andrea Ruzic said:
I spoke with our neuroped. yesterday and she told us to come to the hospital on Monday.
We are going to start using steroids.
I told her that I want Deflazacort and she smile and tell me that all steroids are the same, is this true?
She want my boy in hospital 3 days, is that necessary,?
Are you do the same thing when you start to take steroids?
Thank you,
Andrea
My grandson, Zach is 12.5 years old and was diagnosed with DMD when he was about 7. We immediately put him on Deflazacort. We are now giving him 30 mg. a day. He weighs about 64 pounds and is 5 ft. tall. Does this dosage sound correct to anyone else about this size?
He is is still walking although he is walking on his toes more and seems little weeker thane he used to be. It is such a shame that we live in the USA and have to go outside the U.S. for this medicine. He is on medicaid for his other meds. The FDA has had this sitting on their list to approve for at least 5 years that I know of and they wonder why people go outside!
Hi Karen,

On this side of the pond - Deflazacort is also not routinely available, but it was my choice for my 5 year old and my consultant agreed to prescribe it (most children in the U.K. are on Prednisilone). From my reading the recommended daily dosage for Deflazacort is 0.9mg per kg body weight (rounded to the nearest tablet size).

I guess if Zach is about 64 pounds that is approx. 29 kgs, so based on the above the dosage would be approx. 26mg per day to my reckoning ? I am assuming this has been rounded to a single 30 mg tablet ?

John.
Hi
Our son has been on deflazacort for 11 years, he's 16.5 years old. Deflazacort has less negative side effects than Prednisone. Also, we give him 1,200 IU of vitamin D, 2000 mg calcium, Fosamax ( the women's osteoporosis drug), but he weigh's 102 pounds, about 47 Kg. There are also supplements and other things going on here. You have to treat the WHOLE b ody of the boy.

See a heart specialist if you can to make sure his heart is OK, a pulmonologist ( Lung doctor) to insure his breathing is doing well, and orthopedic for legs and achillies tendons, an endocrinologist to make sure his blood levels of sugar, and endocrine systems are working fine. Yeah we see a lot of doctrors and have a full regiming of things to do for our son...
Andrea,

How are things going? Did you ever get answers on the Deflazacort? Was your doctor willing to prescribe?

Connor has been doing great on it. I'm seeing some improvements and very little issue with side effects at this point. Still a little early to tell on the improvements, but it is nice seeing him have an easier time of it with the stairs. Big Smiles!!

Please let me know how it goes!

Liisa

Andrea Ruzic said:
I spoke with our neuroped. yesterday and she told us to come to the hospital on Monday.
We are going to start using steroids.
I told her that I want Deflazacort and she smile and tell me that all steroids are the same, is this true?
She want my boy in hospital 3 days, is that necessary,?
Are you do the same thing when you start to take steroids?
Thank you,
Andrea

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