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.
Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » vr jul 17, 2015 9:03 pm

Hi Aleta,

I would suggest capsules of 30 mg and then 3 x 30 is 90 mg.
There is nothing to be scared of.

A number of studies have shown that the reduced form of Coenzyme Q10 (ubiquinol) may be more effective than the oxidized form (ubiquinone).

If it is very difficult for you to buy the ubiquinol then give her ubiquinone in the dose you already do.
Because she is so young her body is capable of converting CoQ10 from the oxidized to the reduced form. Do you agree Willy?

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » vr jul 17, 2015 9:48 pm

Yes Corrij, the seller doesen´t have ubiquinol :( so is hard to get any, because everything we buy from outside Argentina, goes to custom offiece, is not imposible, but is a mess.

Anyway; last time we ask a family friend to bring us ribose from a trip, so we gonna ask him again, we need more ribose and D3, we´ll ask for acetyl carnitine and ubiquinol.

Cheers

Ale.

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » ma jul 20, 2015 4:50 pm

Hi Willy and Corrij!

I{m about to buy supplementes, is this the right carnitine?

http://www.amazon.com/Foods-Acetyl-L-Ca ... ANow+Foods

and this one is a good product?
http://www.amazon.com/Life-Extension-Su ... inol+50+mg

or this one?
http://www.amazon.com/Best-Naturals-Ubi ... inol+50+mg

Cheers, have a great week!

Ale.

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » ma jul 20, 2015 5:03 pm

I will try to get one of the Dutch parents to join this discussion
Met vriendelijke groeten,

Willy Witsel

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een tweet of een like bovenin deze forumpagina

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » ma jul 20, 2015 7:56 pm

Hi Aleta,

These products are fine,

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » ma jul 20, 2015 9:28 pm

Thanks! I´ll ask for them now :)

sasje1903
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door sasje1903 » ma jul 20, 2015 10:25 pm

Hi

Emma is 14kg And gets

1x 100mg ubiquinol
And
1x50mg ubiquinol
This is high dose but we discussed since Emma's LV was Still large And slow improvement

The carnitine we now give Acetyl Carnitine
Its 588mg And we give one Every other day.

D ribose about 3gram

Ubiquinol And d ribose we have from healthy origins And the carnitine van docters best.
We buy them at www.iherb.com
Good products And good prices even with shipping from USA.

Hope this helps

Best regards
Saskia

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » ma jul 20, 2015 10:56 pm

Thank you Saskia!

I´ve brought acetyl L carnitine, ubiquinol, D-ribose, vitamine D3 from Now Foods, and ubiquinol 50mg best Naturals.

I hope they arrive soon!

Lara weighs 9,700 kg

L-Carnitine (from casasco lab) 500mg twice at day
Ubiquinone 150mg at day (pharmacy prepared)
D-ribose 2,70mg (Source Naturals) divided in 3 times at day
Magnasium 30mg twice at day

cheers

Ale.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » di jul 21, 2015 9:40 am

Aleta what is the dosis of the acetyl carnitine?

We use 1500mg for an adult with 70kg = 21,5 mg / kg

For lara 21,5 x 10 = 215 mg per day, so every other day 1 x 500mg just like Emma

CHANGE PLAN

Only change the Q10 you bought 50 mg capsules, give here 2 x 50 per day, if you squeeze them always some of the Q10 stay behind so you will and up with the dosis Corrij suggested 90 mg

We wait until we see the results during the next lab tests.

For this kind of change we need BNP values, one value before the change and one after 4 months. If the values improve, we introduce acetyl

So do not start the new Q10 until you have the first BNP value!!!

Good plan? Corrij?
Met vriendelijke groeten,

Willy Witsel

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

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » di jul 21, 2015 12:14 pm

oke :D
Those who do not have enough time for good health,
will not have good health for enough time.

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » di jul 21, 2015 4:20 pm

Hi Willy and Corrij

Lara has the L carnitine from casasco labs, not acetyl yet.

Yesterday I order all the supplements but the person who bring it was on a plane coming back, so, we have to wait a month for him to come back to us and bring the order.

So, we have time to make the BNP test in the meantime :)

Thursday, cardiologist. aaaaaaaaaah :-?

Thank you thank you thank you

Ale.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » wo jul 22, 2015 10:23 am

Yes ask the cardio to do this for our CHANGE PLAN

Cardiologists are used to the fact that they have to do extra blood test is the change the medication

It is the same for us!
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 Argentina, need help

Bericht door Aleta » wo jul 22, 2015 3:14 pm

Ok, I'll let you know tomorrow how everything goes.

Aleta (little panic).

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » do jul 23, 2015 3:27 pm

It is the end of my two months holiday, I am in a panic too :D
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 Argentina, need help

Bericht door Aleta » do jul 23, 2015 10:50 pm

HI, we came a while ago from cardiologist appointment.

Lara´s heart is stable, has a good HR, lungs clear, clinicly very good, and the doc was happy to know that Lara keeps growing in size and weigh, and is living life normal (only with a little fast breathing), and that we shoul let her do what she want, because with exersice she is making cardio rehabilitation.

Shortening fraction still the same 26%-28%

Mitral valve gradient lowed from 65mmgh to 55mmgh, but I don´t understand what that is.

About the atrium and ventricule are a liiiiiiitle smaller, but doc saids is because of the encrease of fursemide dose, (it became a little smaller when she encreased the fursemide) if we decrease the dose, the heart will be larger again :(
I´ll be positive and will think that the heart would be smaller anyway, can I?

We´ve asked about the BNP you want to see, she has no problem, but told us to do it in 15 days, in order to wait a whole month since we increased the enalapril, as we have to wait for the ubiquinol, I think there is no problem, right?
She said that we should do just BNP, NOT pro-BNP, and in the same lab, so we can compare. sounds good?

So this are the news, I´m so frustrated to see doctors and that nobody says "she is healing", BUT I´m very grateful that she at list is stable and growing into a beatiful little and smart girl :)

Regards,

Aleta.

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