DOB: 3/27/1997

Drug/Supp: Deflazacort
Dose: 30mg daily
Date Started: June, 2008
Comments: Was switched from prednisone 120mg twice weekly to daily deflazacort.
Observations: Continues to walk after age 12, growth chart-weight decrease from 95% to 90% in January, 2008.

Drug/Supp: Prilosec
Dose:20mg daily
Date Started: May, 2008, Prevacid probably started sometime in 2007.
Comments: switched from prevacid to omeprazole because insurance stopped covering prevacid. Prevacid started due to frequent bouts of chest pain caused by indigestion/reflux
Observations: working as well as prevacid did. He does still have occassional bouts of indigestion which are relived with tums or gaviscon.

Drug/Supp: Lisinopril
Dose: 5mg
Date Started:June, 2008
Comments: Started due to very beginning stages of cardiomyopathy
Observations: no side effects observed.

Drug/Supp: Carvedilol
Dose: 3.125mg twice daily
Date Started: January, 2009
Comments: Dr. Cripe added this one to work with the lisinopril to slow any further regression of cardiomyopathy.
Observations: no side effects observed

Drug/Supp: CoQ10
Dose: 100mg twice daily
Date Started: late 2007 or early 2008, not sure
Comments: I started this one after learning about it on the ppmd forum.
Observations: no probems

Drug/Supp: Calcium w/ Vitamin D
Dose: one 600mg/ 400 IU tab twice daily
Date Started: He has been on this for years since he never like tums.
Comments: His calcium levels have been fine when checked
Observations: No osteoporosis issues so far.

Drug/Supp: Vit D
Dose: 1000 IU twice daily
Date Started: June, 2008
Comments: increased from 1 daily to 2 daily in January, 2009 since Vit D level was still low
Observations: no problems

Drug/Supp: Multiple Vitamin
Dose: 1 tab daily
Date Started:since diagnosis
Comments: no coments
Observations: seems healthy as result of taking multi vitamin

Views: 91

Replies to This Discussion

Changes as of June '09:

Carvedilol has been increased to 6.25mg twice daily.
Mirilax 1/2 capful every night.


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