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Hi Melinda,
Good question, but I think that the answer is as varied as who likes chocolate over vanilla! My son began Deflazacort just before his 4th birthday. He has done great on it. He has seen all of the benefit, increased strength and stamina, with no side effect except stunted growth. We did have to do about 1 week on prednisone due to a bad case of poision ivy and my sons behavior about did me in! I am thankful every day for deflazacort and that we began it before he lost too much strength. We just had Seph's first MRI of his rear and he has VERY MINIMAL damage....Dr. Wong said, "almost normal"! Is this because we began Deflaz at 4? Or is it just that my son is progressing slowly? We don't know, but I wouldn't change a 'working cocktail' for the world.
As for studies....check into the data that Doug Biggar has on the differences of Deflazacort v. Prednisone. It definitely gives a case for using one or the other AND his preference and the data shows Deflazacort. I am sure there is someone on the board who can tell you where to find the data.
Lori
Well..... I have came to the conclusion to give the Deflazacort a try. My son is very sensitive and emotional as part of his personality, so my thinking is... why even bother with the prednisone. I would rather pay the extra money for deflazacort (Which is not approved by our FDA and my insurance won't cover it) then go through the hassel of trying the prednisone (Which my insurance will cover) which I have a feeling that it wouldn't work for him. So The next question is WHEN? Here are some of his symptoms. He does not jump, needs me to hold his hand or use a railing to walk up stairs and I have to cue him to change his feet. Without a railing or a hand to hold he crawls up them or down. He has an awkward running style, he dosen't fire, Take off. However, he dosen't fall much. But does he not fall because I am super sensitive to his actions and for the most part hold his hand when walking (ex. walking from the parking lot to the store etc.)? To get off the ground he places both hands and feet on the floor and then stands up, but has yet to walk both his hands up his legs, but sometimes places one hand on his knee to give him an extra boost up. He also gets tired. After swim lessons and running around doing errands he complains that his legs are tired. So at that point he rides in the grocery cart, or at home, he sits and watches T.V until he gets his second wind. Let me know what ya'll think, and again I appreciate all of your advice and oppinions! You have all definatley helped me make the decision of what type of stereroids to use. I felt that the information from Doug Biggars was supper helpful. OH! One last question.....What is the best type of dosage schedule for these champions?
Melinda
The dosage is 0.9mg per body kilogram, I do not know the imperial doseage in pounds but I am sure it is freely available fron the USA members. (Perdnisone is 0.7 mg per kg). When to start is a trick one, with Justin, he was already very weak, crawling up his egs to stand etc, so he started as soon as we knew. Joshua (now 4 years and 5 months) is still not on the drug. We feel he should go for as long as possible before we start, Dr Biggar's response to this question is "You will know when" The problem with sstarting early is the huge risk of side effects early and the possibility of having to reduce the doseage or even take him off it as his tolerance is just not working, so in theory, when he would need it the most, he would be deprived of it due to the side effects. These are huge and should never be taken forgranted.
My advice would be to hold on for as long as possible, but research and try and find as many simular parents as you and get their opinions on the progress. Some that are a few years ahead that sterted young and others that waited till it felt like the right time.
Good luck, all I know is that steroids have far less side effects if compared to the effects of DMD, so my advice is at least give it a try and manage the side effects for as long as possible if they arise.
PS do not forget the Vitamin D and calcium for his bones. daily in large doses, I will get the ratio as I do not remember the formula for this.
Colin
Melinda Colby said:Well..... I have came to the conclusion to give the Deflazacort a try. My son is very sensitive and emotional as part of his personality, so my thinking is... why even bother with the prednisone. I would rather pay the extra money for deflazacort (Which is not approved by our FDA and my insurance won't cover it) then go through the hassel of trying the prednisone (Which my insurance will cover) which I have a feeling that it wouldn't work for him. So The next question is WHEN? Here are some of his symptoms. He does not jump, needs me to hold his hand or use a railing to walk up stairs and I have to cue him to change his feet. Without a railing or a hand to hold he crawls up them or down. He has an awkward running style, he dosen't fire, Take off. However, he dosen't fall much. But does he not fall because I am super sensitive to his actions and for the most part hold his hand when walking (ex. walking from the parking lot to the store etc.)? To get off the ground he places both hands and feet on the floor and then stands up, but has yet to walk both his hands up his legs, but sometimes places one hand on his knee to give him an extra boost up. He also gets tired. After swim lessons and running around doing errands he complains that his legs are tired. So at that point he rides in the grocery cart, or at home, he sits and watches T.V until he gets his second wind. Let me know what ya'll think, and again I appreciate all of your advice and oppinions! You have all definatley helped me make the decision of what type of stereroids to use. I felt that the information from Doug Biggars was supper helpful. OH! One last question.....What is the best type of dosage schedule for these champions?
Melinda
Hi Melinda,
My Dr. told me Deflazacort would be better for Alec. After reading Dr Bigger's findings, we decided to give it a try. My insurance company actually agreed to cover it. My Dr and I both wrote a letter to the board of trustees explaining there are more adverse side effects from prednisone, and there would be more dr bills to cover. Plus the fact that there a lot of European countries who use Deflazacort because of the low side effects, but it is not worth the time or money to have it passed by the FDA because there is not enough need here in the US for it. They did some research and had a lawyer look over Alec's case. It took a couple of months and a lot of phone calls, but in the end it paid off. Alec started on the Deflazacort right after his 4th birthday. (August of this year). He takes 15 mg once a day. Make sure to get a Rx from your Dr for zantac or something for his stomach. Alec takes this twice a day. He is doing ok, the main thing I have noticed is his behavior-not so good. He was just recently diagnosd with RLS (restless leg syndrome). This keeps him up at night, and he wakes me up. I don't know if I should blame the bad behavior on lack of sleep, or the Deflazacort. Maybe a little of both!! Anyways, I wish you luck with your next step of the game. Hang in there!! AMY
Amy Wickert said:Hi Melinda,
My Dr. told me Deflazacort would be better for Alec. After reading Dr Bigger's findings, we decided to give it a try. My insurance company actually agreed to cover it. My Dr and I both wrote a letter to the board of trustees explaining there are more adverse side effects from prednisone, and there would be more dr bills to cover. Plus the fact that there a lot of European countries who use Deflazacort because of the low side effects, but it is not worth the time or money to have it passed by the FDA because there is not enough need here in the US for it. They did some research and had a lawyer look over Alec's case. It took a couple of months and a lot of phone calls, but in the end it paid off. Alec started on the Deflazacort right after his 4th birthday. (August of this year). He takes 15 mg once a day. Make sure to get a Rx from your Dr for zantac or something for his stomach. Alec takes this twice a day. He is doing ok, the main thing I have noticed is his behavior-not so good. He was just recently diagnosd with RLS (restless leg syndrome). This keeps him up at night, and he wakes me up. I don't know if I should blame the bad behavior on lack of sleep, or the Deflazacort. Maybe a little of both!! Anyways, I wish you luck with your next step of the game. Hang in there!! AMY
Hi,
I read about your sons RLS. Does he take minerals? Most cases od RLS are due to mineral deficiencies, like calcium or magnesium. I give it my son. I also started on multiminerals myself and cured my RLS and muscle twitches, (due to too much coffee)
Christine
christine good said:Amy Wickert said:Hi Melinda,
My Dr. told me Deflazacort would be better for Alec. After reading Dr Bigger's findings, we decided to give it a try. My insurance company actually agreed to cover it. My Dr and I both wrote a letter to the board of trustees explaining there are more adverse side effects from prednisone, and there would be more dr bills to cover. Plus the fact that there a lot of European countries who use Deflazacort because of the low side effects, but it is not worth the time or money to have it passed by the FDA because there is not enough need here in the US for it. They did some research and had a lawyer look over Alec's case. It took a couple of months and a lot of phone calls, but in the end it paid off. Alec started on the Deflazacort right after his 4th birthday. (August of this year). He takes 15 mg once a day. Make sure to get a Rx from your Dr for zantac or something for his stomach. Alec takes this twice a day. He is doing ok, the main thing I have noticed is his behavior-not so good. He was just recently diagnosd with RLS (restless leg syndrome). This keeps him up at night, and he wakes me up. I don't know if I should blame the bad behavior on lack of sleep, or the Deflazacort. Maybe a little of both!! Anyways, I wish you luck with your next step of the game. Hang in there!! AMY
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