Replies to This Discussion

Permalink Reply by Cathy Johnson on August 24, 2010 at 2:23pm

James started on Prednisone just before his fourth birthday (15 months ago). Our neurologist said 4 is the earliest he would start and that there has been good research supporting an early start. I was nervous, but the Prednisone has been a miracle drug for us. It has given him his childhood. He's a little shorter than he would be without it, but the doctor said that smaller boys actually do better long term. So far we've had a positive experience, but each boy is different.

In terms of supplaments - We do a multi-vitamin and a Vitamin D supplament every day. The doc said that research he's seeing is pointing more and more to vitamin D in addition to calcium to keep bones strong.

Hope this helps.

• ▶ Reply

Permalink Reply by Ofelia Marin on September 20, 2010 at 5:55pm

Hi Leslie,

My opinion is a little different. I think vitamins and supplements can and should be started as soon as possible, especially Vit D3. Many DMD boys are deficient regardless of steroid treatment. You can do a blood test to check and start as soon as possible. I do not believe that starting steroids at age 3 as opposed to age 4 makes a significant difference in the long run. The literature definitely doesn't show either way. There are boys starting steroids late who progress better than the ones starting as early as age 3-3.5. I think starting at age 4-5 is fine. Let's be honest here, only new treatments can make as a significant difference in modifying the progression, certainly not the one year difference from age 3 to 4 for steroids. If they would not have side effects it would not be a problem starting them as early as possible but they do have and many doctors and parents have that in mind when they recommend them. Also, there are different steroid regimens, some have less side effects, many doctors have that in mind as well when recommending steroids for a very young boy. It is a difficult decision, I know. My son is almost 3 and I do not intend to start the daily regimen for the next 6-12 months. However, we have been giving him Vit D3 (his levels were low), CoQ10 and Protandim along with a multi-vitamin for a while now and we might start a different dosing regimen (with less side effects) of steroids in a few months. Also deflazacort is reported to have less side effects than prednisone.

Good luck!
Ofelia

• ▶ Reply

Permalink Reply by Leigh Alisen Pernosky on November 6, 2010 at 11:24am

What is the CoQ10 and Protandim? I've never heard of these.
Thank you!



Ofelia Marin said:

Hi Leslie,

My opinion is a little different. I think vitamins and supplements can and should be started as soon as possible, especially Vit D3. Many DMD boys are deficient regardless of steroid treatment. You can do a blood test to check and start as soon as possible. I do not believe that starting steroids at age 3 as opposed to age 4 makes a significant difference in the long run. The literature definitely doesn't show either way. There are boys starting steroids late who progress better than the ones starting as early as age 3-3.5. I think starting at age 4-5 is fine. Let's be honest here, only new treatments can make as a significant difference in modifying the progression, certainly not the one year difference from age 3 to 4 for steroids. If they would not have side effects it would not be a problem starting them as early as possible but they do have and many doctors and parents have that in mind when they recommend them. Also, there are different steroid regimens, some have less side effects, many doctors have that in mind as well when recommending steroids for a very young boy. It is a difficult decision, I know. My son is almost 3 and I do not intend to start the daily regimen for the next 6-12 months. However, we have been giving him Vit D3 (his levels were low), CoQ10 and Protandim along with a multi-vitamin for a while now and we might start a different dosing regimen (with less side effects) of steroids in a few months. Also deflazacort is reported to have less side effects than prednisone.

Good luck!
Ofelia

• ▶ Reply

Permalink Reply by Joshua's mom on November 6, 2010 at 11:44am

Hi Leigh,

Protandim and CoQ10 are antioxidants which clean out the body of chemicals & toxins. CoQ10 can cause a build up if taken too long, but Idebenone (Catena), which is still a supplement in the U.S., is in a phase III clinical trial here in Canada, for Duchenne. Idebenone is an extreme CoQ10 which does not cause build up, but continues through to the rest of the body.

Naomi

http://www.protandim.com/
http://www.drugs.com/clinical_trials/publication-european-heart-jou...

• ▶ Reply

Permalink Reply by Ofelia Marin on November 15, 2010 at 4:15pm

OK. I need to add some things. I made a lot of research into steroids since my last post. Dr. Escolar emailed me that she has data supporting early steroid start. She said that with each year of delay you lose a number of months of ambulation (in the long run). She did not remember the number of months exactly. So it looks like the earlier the better... Short might be good for DMD, though, but I think there is a balance between self-confidence and strength...and being too short definitely does not help these kids' self-confidence I would think. Also low bone density after years of steroid use can produce fractures...another bad thing. :(

Since we have no choice at the moment...it's a very difficult decision!



Ofelia Marin said:

Hi Leslie,

My opinion is a little different. I think vitamins and supplements can and should be started as soon as possible, especially Vit D3. Many DMD boys are deficient regardless of steroid treatment. You can do a blood test to check and start as soon as possible. I do not believe that starting steroids at age 3 as opposed to age 4 makes a significant difference in the long run. The literature definitely doesn't show either way. There are boys starting steroids late who progress better than the ones starting as early as age 3-3.5. I think starting at age 4-5 is fine. Let's be honest here, only new treatments can make as a significant difference in modifying the progression, certainly not the one year difference from age 3 to 4 for steroids. If they would not have side effects it would not be a problem starting them as early as possible but they do have and many doctors and parents have that in mind when they recommend them. Also, there are different steroid regimens, some have less side effects, many doctors have that in mind as well when recommending steroids for a very young boy. It is a difficult decision, I know. My son is almost 3 and I do not intend to start the daily regimen for the next 6-12 months. However, we have been giving him Vit D3 (his levels were low), CoQ10 and Protandim along with a multi-vitamin for a while now and we might start a different dosing regimen (with less side effects) of steroids in a few months. Also deflazacort is reported to have less side effects than prednisone.

Good luck!
Ofelia

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• Next ›
• Page