Baby girl, dilated miocardyopathy from Argentina, need help

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Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » vr aug 08, 2014 12:33 am

and the carnitine they use in lab is L-carnitine

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » vr aug 08, 2014 11:53 am

Aleta schreef:I got the Q10, it´s 150mg each capsule, one at day, is that right?
An adult (70kg) I prescribe 200 - 400 mg / day that means

2,9 - 5,7 mg Q10 / kg

for Lara the doses will be for 8 kg weight 23 - 46 mg / day

But....................................

This research says http://www.ncbi.nlm.nih.gov/pubmed/19096117

The acceptable daily intake (ADI) is 12mg/kg/day, calculated from the no-observed-adverse-effect level (NOAEL) of 1200 mg/kg/day derived from a 52-week chronic toxicity study in rats, i.e., 720 mg/day for a person weighing 60 kg

Other research says http://www.ncbi.nlm.nih.gov/pubmed/16814438

Much higher levels have been tested without adverse effects and may be safe, but the data for intakes above 1200 mg/day are not sufficient for a confident conclusion of safety.

1200 mg / day is safe. I expect that this doses is for an adult of 70kg

1200 / 70 = 17 mg / kg For Lara 17 x 8 = 137 mg per day

So my conclusion is that this is a high but acceptable doses. What I would do is punch a hole in the capsule and push the Q10 out on a spoon with something see likes. The 150 mg will then be reduced to approximately 120 mg because a part of the Q10 will not come out. If you are breast feeding give her the Q10 just before you feed her.

THERE IS ONE THING YOU SHOULD CHECK

Is it an oil based Q10? The powder form does not work so wel
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
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Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » vr aug 08, 2014 11:56 am

Aleta schreef:and the carnitine they use in lab is L-carnitine
That is the correct carnitine

Now you should discuss the doses issue with your doctor

To my knowledge 50 mg per day is 3 - 4 times TOO LOW
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » vr aug 08, 2014 10:52 pm

hi willi, Seba ask the doc about the carnitine dosis, her response was this: 300 mg son 3 ml, Lara is taking 500mg............. meybe we got som misunderstanding on the metric system?

I have 2 more questions:

since she is having Qo10 and carnitine, when do we have too see eny improve? is there any avarege time for that? She got cardio appointment in 3 weeks, it´s to soon right?

and you said something like "she is no seriously ill", why do you think that, everyone keeps reminding me how serious is her condition.... do you mean that she is still with no symthoms?

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » vr aug 08, 2014 11:23 pm

Sorry not so quickly

So Lara is on 500mg l-carnitine and 150mg Q10 clrrect?

And the Q10 is an oil filled capsule NOT a tablet or capsule filled with powder?
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » vr aug 08, 2014 11:28 pm

Bed time for me, see your answer tomorrow
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » vr aug 08, 2014 11:38 pm

the q10 is a capsule filed with powder, and she is taken 150mg and 500mg of carnitine, but not until tomorrow because there was a miunderstoos between thr prescription and the pharmacy, they have to make it again, good night! text seba´s phone fos skype when you want to.

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » za aug 09, 2014 11:36 am

What is exactly the name of the Q10 that your pharmacy is using.

In powder based Q10 formulas the Q10 is often connected to an other substance. If that is the case I want to know what substance.

In The Netherlands I do not advise powder based Q10

This is the reason why I do this

According to the results of bioavailability studies, oil-based (e.g., soybean oil) CoQ10 contained in a soft gelatin capsule is absorbed much more efficiently than conventionally marketed, powder-based oral dosage forms

http://www.medscape.com/viewarticle/409742_8

Thus, the data from both the trials show that Q-Gel, the new solubilized form of CoQ10, is vastly superior to typical commercially available preparations of CoQ10. This means much lower doses of Q-Gel will be required to rapidly reach and maintain adequate blood CoQ10 values than with any of the other currently available products.

http://www.ncbi.nlm.nih.gov/pubmed/9565826

Solubilized formulations of CoQ10 (both ubiquinone and ubiquinol) have superior bioavailability as evidenced by their enhanced plasma CoQ10 responses.

http://www.ncbi.nlm.nih.gov/pubmed/17482886
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Berichten: 503
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » za aug 09, 2014 3:25 pm

I´ll call the pharmacyin a while and ask, it´s not a 24 hours open and I dont´t think it´s open now. I belive they do open at 10am.

but...... here is thhs thin, with carnitine thhere was a mistake, the doctor wanted to us buy Abicar 10ml, the concentration is has the 500mg lara need, it´s 1g/ml. But, she didn´t write the comercial name in the prescription, and in the pramacy understood that we need a compound (!!!!), so, I gues I´ll meet the doc again to have the prescription for avicar, meanwhile I give Lara the compound. I don´t know if with Q10 she got the idea to us buy a trand too.....

Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » za aug 09, 2014 3:35 pm

In the lab used Qo10 that has lactose excipient, the name is Q10

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » za aug 09, 2014 3:47 pm

We will have a video conference call using FaceTime at 09:00 your time, 15:00 my time
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Berichten: 503
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » za aug 09, 2014 3:50 pm

it´s 9:50, do you mean in 10 minutes?

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » za aug 09, 2014 3:51 pm

yes
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Willy
Verslaafd aan het forum
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Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » za aug 09, 2014 3:59 pm

Tried Face Time on +541160415424

error message FT not available
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Willy
Verslaafd aan het forum
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Lid geworden op: di okt 09, 2001 3:00 am
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » za aug 09, 2014 4:04 pm

Did send a text message to this number but did not get a message back
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

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