Re: Re: Angel- CO Q10 orphan drug status! update

[Guest guest]

Hi!!

I would love to meet! My son is 4 years old and has partial defect in the complex 1. His energy level is around 30% it was confirmed on a skin biopsy. He has low muscle tone, loose joints, pectus excavatum, his speech is delayed he has apraxia. He walks with a walker and he gets around everywhere. We live in the country and I love it! We are 10 minutes south of Dubuque. It is so quiet. The air is so clean.

I just ordered 200$ worth of Coenzyme Q10 and riboflavin Mayo could not help me out. It is so expensive! I wish the insurance would pay for it but I can't even get a pharmacist to fill it.

Talk with you soon!

ANgel

Re: RE: CO Q10 orphan drug status! update

From what I understand, that means at this point in time, CoQ10 is still not prescription. Dog gone it!But soon we hope. Apparently that announcement was 7/2000 and the liquid has an NDC # already. My kid has flat out refused the idea of a liquid med even though Dr. S said he'd write a scrip for it (and apparently medicaid would pay, could fill it right there at the hospital). The gel-caps will have an NDC (rx) number later this year someone here said, so I'm hopeful. Meanwhile, at current doseage (600 mg a day for us) it only costs about $60 a month. Cheaper if I convert to gelcaps (can reduce dosage to around 1/3 what I give now since it's stronger) but I buy bulk so I won't use what I have for about 4 months yet. Maybe by then I won't have to pay at all :)kjmom to De-Arbra age 16 Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

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