Baby girl, dilated miocardyopathy from Argentina, need help

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » wo aug 06, 2014 10:36 pm

Ok, we'll do that. We got the ok from the cardiologist dto vive Lara D ribose and magnesium. Bit now recepie, so we'll start dto look for brands.

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

Bericht door Willy » wo aug 06, 2014 11:01 pm

First the carnitine and the q10 as the doctor ordered

Once she is on the right dosis dor a couple of weeks we start magnesium and two weeks later d-ribose

Tomorrow I will mail you,some execelent products, may be you can buy them via internet

It is bed time here
Met vriendelijke groeten,

Willy Witsel

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

sasje1903
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door sasje1903 » wo aug 06, 2014 11:04 pm

Im sorry i thought i posted but dont see it...

Emma gets 5ml carnitine twice a day

She weighs 12,5 kg and gets 1gram a day...

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

Bericht door Aleta » wo aug 06, 2014 11:30 pm

the lab was close, I got to get back in 1 hour, today I´ll give her waht doc said, and when I get the bottle I´ll write you exactly wat it saids, I you think it´s better to giver more we´ll do. The Q10 dosis is fine? I´ll get the capsules tomorrow from another pharmacy.
Lara´s heart it´s the same, but doc saids is too soon to se changes. Give me ok for the other vitamins, I´m very sorprised! she said that everything that adds, it´s ok.
I´ve got scare because she told that with some mithocondrial disorder Lara might not be abble to get a transplant, and we repaet the blood test for that today, We´ll get the results in two months!
Anyway I hope she qet better with this and don´t ever need it!

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

Bericht door Aleta » do aug 07, 2014 1:35 am

this what is says in the bottle: Carnitine 10mg/ml I have to give her 2,5ml twice a day, that would be 50mg at day, that´s right?

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

Bericht door Willy » do aug 07, 2014 10:40 am

50 mg per day is far too low. I calculated 226 mg per day
Willy schreef:1980 mg for a 70 kg adult is not 282 mg / kg but 28,2 mg / kg

Om average 30 mg / kg. For your doughter this will be 8 x 30 = 226 mg per day
And Emma with 12 kg weight gets 1000mg. An ideal dosis for Lara could be between 300 - 600 mg. Because carnitine is extremely safe.

Here you can read the official prescriptioj for children

http://translate.google.nl/translate?hl ... h11193.pdf

It says: infants a daily dosis of 1 gram

The reason that you use a high dosis is that a sick heart needs more carnitine

See article Dr Sinatra http://www.ncbi.nlm.nih.gov/pubmed/19284182

See yuotube film Dr Sinatra https://youtube.com/watch?v=-7sh7wFZe6M

QUESTION what kind of carnitine is it? L-carnitine or Acetyl-l-carnitine?
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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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » do aug 07, 2014 3:31 pm

I´ll call to the lab to ask what kind of carnitina they prepare. I´ve give Lara last nigh 2,5ml (5mg) and have a little diarrea ond vomit), I guess I nedd to raise the dosis little by little.
Other thing, if she can take it and I give a high dosis, I will need to get more carnitine that I got prescipted, can you recomend a trand?

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

Bericht door Willy » do aug 07, 2014 5:34 pm

Aleta schreef:I´ve give Lara last nigh 2,5ml (5mg) and have a little diarrea ond vomit), I guess I nedd to raise the dosis little by little.
Do you mean 50mg?

Normally we give carnitine 2 - 3 times a day to chidren and not a one time dosis as you did
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 » do aug 07, 2014 5:43 pm

Aleta schreef:Other thing, if she can take it and I give a high dosis, I will need to get more carnitine that I got prescipted, can you recomend a trand?
First contact the doctor that prescribed the carnitine and ask him why the doses is only 50mg?

Give him my way of calculating the doses on the basis of an adult who weighs 70 kg

A daily doses of 1980 mg is prescribed for adults with cardiomyopathy

1980 / 70 = 28,8 mg / kg

For Lara with 8 kg weight this will be 28,8 x 8 = 226 mg per day

Since carnitine is extremely save I would recommend 300 mg per day
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 » do aug 07, 2014 5:54 pm

ok, I´ll do that
last night i´ve gave her 25 mg, and after a while she vomit and diarrea, maybe it´s coincidence.
two hours ago I gave her another 25 mg, still ok. tonoigh will give her again 25 and if she´s ok, the incrase the dosis, sounds good?

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

Bericht door Willy » do aug 07, 2014 5:57 pm

Skype?
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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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » do aug 07, 2014 5:59 pm

not whit seba´s computer now, can you try to reach him via skype or facetime?

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

Bericht door Willy » do aug 07, 2014 6:11 pm

Facetime does not work because The number is not correct

Skype to sebastian sage lonegro does not work at the moment, he has to accept my skype request
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 » do aug 07, 2014 6:18 pm

Aleta schreef:ok, I´ll do that
last night i´ve gave her 25 mg, and after a while she vomit and diarrea, maybe it´s coincidence.
two hours ago I gave her another 25 mg, still ok. tonoigh will give her again 25 and if she´s ok, the incrase the dosis, sounds good?
SKYPE does not work

Diaree could possibly be a side effect of carnitine, but children get now and then diaree so it is not clear if the carnitine is the cause

The first thing you must do is study the information I gave to you why sick hearts need more carnitine

Then you should discuss with your docter first why he is giving her 50 mg instead of 250 mg

Remember Emma with 12 kg weight gets 1000mg a day

You have time enough your doughter is not critically ill
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 » do aug 07, 2014 11:20 pm

I got the Q10, it´s 150mg each capsule, one at day, is that right?

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