DOB: 7/31/2002
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Drug: Deflazacort
Dose: 15 mg/day
Date Started: Sept 2005
Comments:
Observations: No behavioral issues. Side effects have been reduced growth, excess hair, osteoperosis.
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Drug: Genotropin
Dose: 1mg/day via injection
Date Started: Oct 2009
Comments:
Observations: No side effects notice. Has grown 3/4" in just over a month.
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Drug: Fosamax
Dose: 17.5 mg, once weekly
Date Started: Sept 2008
Comments: Osteoperosis caused by steroid use
Observations: Feb 2009 – bone density has significantly increased. Continuing use for another 6 months. If more improvement at next DEXA (8/09), then may be able to discontinue. AUG 2009 - DEXA showed even more improvement. Sam's taking a holiday from Fosamax for now.
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Supp: Co-enzyme Q10 (from epic4health)
Dose: 100mg, 2x daily
Date Started: Sept 2005
Comments: Dose started at 60 mg/day, increased to 200mg/day after 1 year.
Observations: No side effects observed.
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Supp: L-Arginine (Twin Labs Nitrate3 Fuel Shot…has been discontinued)
Dose: 1.5g, 2x daily
Date Started: late 2005 or early 2006
Comments: Stopped for about 6 months in 2007. Had heard of possible issues, but info from doctor helped us decide to start it again.
Observations: No side effects observed. Will switch to Juven when supply runs out in a few months.
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Supp: Protandim
Dose: 1/4 tablet, 2x daily
Date Started: not positive, maybe 2006??
Comments:
Observations: No side effects observed. Saw some softening of the calves at first, but haven’t notice it lately.
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Supp: Vitamin D3 (Puritan’s Pride)
Dose: 2500 IU daily
Date Started: 2005/2006
Comments: Dose has been increased several times.
Observations: No side effects observed.
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Supp: TruNoni CRYO-HD6X
Dose: ½ tsp daily
Date Started: March 2009
Comments: Read about this one on the message board. Figured it couldn’t hurt and might even help.
Observations: No side effects observed.
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Supp: Barlean’s Fresh Catch Kids DHA
Dose: ½ tsp daily
Date Started: May 2009
Comments: Another one heard about here on the board. Sam was recently diagnosed ADHD. Am hoping this may help. I’m also using it with my non-DMD son.
Observations: Just started, so no observations yet.
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Past Drug: Magnesium
Reason Stopped: Contraindicated with Fosamax use.
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Past Drug: Calcium chews
Reason Stopped: Per Dr. Wong and nutritionist, Sam gets more than enough calcium in his diet.
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