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

[Guest guest]

Hi Darla! I live in Dubuque Iowa. Do you know where that is? It is about 3-4 hours away from Des Moines.

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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[Guest guest]

Hi Darla! I live in Dubuque Iowa. Do you know where that is? It is about 3-4 hours away from Des Moines.

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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[Guest guest]

Hi Darla! I live in Dubuque Iowa. Do you know where that is? It is about 3-4 hours away from Des Moines.

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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[Guest guest]

Yep, I have heard of it and probably been there before. We used to live in Chicago and know you are near the border of Illinois. I grew up in North-east Iowa. My hubby and I have been here in Iowa, LA, and Chicago in our 17 years of marriage. I like the size of Des Moines the best. Chicago was nice but busy, LA was too spread out for me, and living in the country just isn't for me. It is nice to know there are other Mito families here in Iowa. There are (after Kim moves here) 3 families in Des Moines, you, Janelle Mc Guire, and I believe one other family here in Iowa. It would be neat to get a group together some day. Tell me about your kids. How old is he/she or they? What are their symptoms or which type of Mito, etc.? Darla: mommy to Asenath, Zipporrah, and the gang 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. Get more from the Web. FREE MSN Explorer download : http://explorer.msncom Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Yep, I have heard of it and probably been there before. We used to live in Chicago and know you are near the border of Illinois. I grew up in North-east Iowa. My hubby and I have been here in Iowa, LA, and Chicago in our 17 years of marriage. I like the size of Des Moines the best. Chicago was nice but busy, LA was too spread out for me, and living in the country just isn't for me. It is nice to know there are other Mito families here in Iowa. There are (after Kim moves here) 3 families in Des Moines, you, Janelle Mc Guire, and I believe one other family here in Iowa. It would be neat to get a group together some day. Tell me about your kids. How old is he/she or they? What are their symptoms or which type of Mito, etc.? Darla: mommy to Asenath, Zipporrah, and the gang 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. Get more from the Web. FREE MSN Explorer download : http://explorer.msncom Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Yep, I have heard of it and probably been there before. We used to live in Chicago and know you are near the border of Illinois. I grew up in North-east Iowa. My hubby and I have been here in Iowa, LA, and Chicago in our 17 years of marriage. I like the size of Des Moines the best. Chicago was nice but busy, LA was too spread out for me, and living in the country just isn't for me. It is nice to know there are other Mito families here in Iowa. There are (after Kim moves here) 3 families in Des Moines, you, Janelle Mc Guire, and I believe one other family here in Iowa. It would be neat to get a group together some day. Tell me about your kids. How old is he/she or they? What are their symptoms or which type of Mito, etc.? Darla: mommy to Asenath, Zipporrah, and the gang 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. Get more from the Web. FREE MSN Explorer download : http://explorer.msncom Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[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.

Get more from the Web. FREE MSN Explorer download : http://explorer.msncom

Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com