Deflazacort 24mg  2/5/2012

Vitamin D 500  Calcium 500  2/1/2010-present

Matthew took Deflazacort from 2/1/2010 till 4/1/2011  @24mg

Flinstone Vitamins x2 day

 

Due to our relocation to California and money trouble went to Prednisone 20mg

4/1/2011 till 9/1/2011  

Prednisone was stopped due to stomach pains and extreme weight gain.  Appeared to have withdrawal type pain in lower back that required an ER visit.  All tests came back good, but I though he should see our neurologist.  I was weening him according to the vague layout we recieved from Loma Linda.  It took 5 months to see him with nothing really discussed about the episode.  In the 5 months, Matt's strength has decreased dramatically.   I didn't want to start steroids until I spoke with doctor, so there you go.

 

Prednisone also had taken a toll on my former stepson who is 13.

He had only taken it for about 1 year from 6/2010-8/2011  @40mg I believe.  He wasn't even recognizable when we saw him.

 

He is now resuming with Deflazacort @48mg  on 2/5/2012

He is also on Calcium and Vitamin D supplements

 

What are supplements that are recommended to slow muscle wasting?

I have heard creatin is very good at that, so thinking i will start that this week...please give advise if you can..thanks...Mark

 

 

 

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Replies to This Discussion

Mark, Hello!   Hope Matthew is doing well.  I am so sorry that you are having to go through so much stuff on top of the DMD issues.  I can't imagine how difficult leaving home and heading back to California must have been.  Family support is everything, so I can understand why you made that choice.  It is so hard to know what is right with our boys, but I can tell by reading your profile and this post that whatever is best for Matthew is what's best.  I'm glad to hear that your younger son is doing well.  My husband and I had 3 sons, before our son Wyatt (then 10 months) was diagnosed.  It turns out that I'm a carrier, but thankfully my 3 older boys were spared this horrible disease.   Suppliments and stretches have been huge for Wyatt.  In fact, we just got back from Cincinnati Children's (we live in Seattle area) and Wyatt's doctor was thrilled with his great progress.  He started deflazacort (11mg) about 6 months ago, and he's doing great.  As far as suppliments, this is what we do. (he's 4 years old today)

 

       3400 IU's vitamin D (we live in Seattle hahahaha - sun doesn't exist here)

       50 mg CoQ10

       1 ml Vitamin D

      1/2 pill protandim (it's for heart health, check out their website for more info)

      drinks juven (anti-oxident, energy type drink)

      15 ml miracle fruits (fruit suppliment)

 

That's about it.  I hope that you have a great day, take care.

    

Thank you for sharing the information.  I have simply relied way too much on doctor advise and now I feel like I have allowed my sons condition to progress quicker than it should have.  Doctors have no compassion, regardless of how smart they are, so the best advise I have recieved has been over the past few weeks with other families who care.  Ya, I read my own email and it sounds terrible about leaving North Carolina.  It was actually sitting in Wake Forest for a week with a few drop ins from my wife and no visits or phone calls from any of her family.  I swore I would never feel that isolated again.  She even questioned the paternity of my boys because Matt had DMD.   Needless to say, I told her I was going to California and she needed to come, she said no, and there you have it.  It not realistic to keep two sick brothers apart and keep Matt that far from his mom.  Families like ours aren't afforded the normal life with this disease.  We have to sacrifice and in some cases give up what we care about in order to do whats best for our children.  I am really happy to hear that your older boys are ok.  My ex wife lives with her two sons and I have mine...all in all two are confirmed and she has a two year old that is very suspect.  If thats the case, I don't how we could get through it.  We considered living together, but she it is quite chaotic with all the boys together.  I will definitely look through your supplements.  I am going to put Matt on creatine as well.  I hear it slows muscle wasting, so whatever helps a little.  Good luck with your baby.  I tell you, he has many more years of limitless fun ahead of him.   Matt is slowing down but he goes to karate every night and loves it.  He played t-ball last year, even though he was slower than the other kids...he's still living and having fun...talk with you soon...Mark

Wyatt's Mommy, Melissa said:

Mark, Hello!   Hope Matthew is doing well.  I am so sorry that you are having to go through so much stuff on top of the DMD issues.  I can't imagine how difficult leaving home and heading back to California must have been.  Family support is everything, so I can understand why you made that choice.  It is so hard to know what is right with our boys, but I can tell by reading your profile and this post that whatever is best for Matthew is what's best.  I'm glad to hear that your younger son is doing well.  My husband and I had 3 sons, before our son Wyatt (then 10 months) was diagnosed.  It turns out that I'm a carrier, but thankfully my 3 older boys were spared this horrible disease.   Suppliments and stretches have been huge for Wyatt.  In fact, we just got back from Cincinnati Children's (we live in Seattle area) and Wyatt's doctor was thrilled with his great progress.  He started deflazacort (11mg) about 6 months ago, and he's doing great.  As far as suppliments, this is what we do. (he's 4 years old today)

 

       3400 IU's vitamin D (we live in Seattle hahahaha - sun doesn't exist here)

       50 mg CoQ10

       1 ml Vitamin D

      1/2 pill protandim (it's for heart health, check out their website for more info)

      drinks juven (anti-oxident, energy type drink)

      15 ml miracle fruits (fruit suppliment)

 

That's about it.  I hope that you have a great day, take care.

    

I found this on University of Maryland's Website for Muscular Dystrophy. I hope this helps.

http://www.umm.edu/altmed/articles/muscular-dystrophy-000113.htm

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