DOB: 12-12-98
DRUG: deflazacort
DOSE: 30 mg am
START DATE: 2004
COMMENTS:
OBSERVATIONS: only noticable side effect is round face, if we really avoid salt it is much better

DRUG: lisinopril
DOSE: 5mg am
START DATE: 4-18-09
COMMENTS: Dr Cripe at cinci children's just noticed scar tissue in austin's heart
OBSERVATIONS: none so far

SUPPLIMENT: vit D
DOSE: 2000 mg am
START DATE: 4-18-09
COMMENTS: recomended at cinci visit
OBSERVATIONS: none

SUPPLIMENT: miralax
DOSE: 2 tbs every other day
START DATE: 4-18-09
COMMENTS: Dr Wong noticed austin was constipated
OBSERVATIONS: no change in anything so far

Views: 92

Replies to This Discussion

3-16-10 update, added 6 mg per day deflazacort to help with weakness. also began coq10, no observations on that. began omega fish oil, no observations. and due to sleep issues began melatonin at night. hope to report full nights of sleep soon! started calcium vit because i am concerned with intake in diet
Hello Jenn, was just browsing and was wondering how many mg of COQ10 you give your son. How do you get him to swallow pills? Also, I heard vit. E , the herbal root Rhodiola Rosea, and Selenium help too. I have recently been giving Athen Glucosamine and Chondroitin Soft Chews I bought at Wal Mart.

jenn said:
3-16-10 update, added 6 mg per day deflazacort to help with weakness. also began coq10, no observations on that. began omega fish oil, no observations. and due to sleep issues began melatonin at night. hope to report full nights of sleep soon! started calcium vit because i am concerned with intake in diet

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