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

Bericht door Willy » vr jul 24, 2015 8:52 pm

Aleta schreef:Hi, I´m from Argentina. I´m sorry but I don´t know dutch at all, I can write to you in spanish or english, so sorry.
I have a daughter of six month who has diagnosed with dilated miocardiophaty, with a sever left ventricular dilatation and 20% of function.
She is at home, but receiving treatment with enalapril, carvedilol (twiace a day), spirnolactona (3 times a day) adn fursemida (4 times a day).
I´ve found the Children's Cardiomyopathy Foundation Community, and one of the members of that group, told me about you and and the supplements her daughter takes, I would like to learn more about that, to talk to my cardiologist and maybe get my baby better.
I´m sorry but I´m so far away from you that this is the only way to conect you.
If you need to know something more about my baby diagnosis (Lara), let me know.
Thanks a lot for you time
Aleta august 3 schreef:Lara is diagnosed with non compaction CMP

http://en.m.wikipedia.org/wiki/Noncompa ... iomyopathy

We got our firsts tests from the hospital where she first got hospitalizated for the bronquilitis, and then they foun de miocardyopathy. It says BNP 2300 PG/ML (regular valiu under 142 PG/ML) is that what you ask for? what´s that mean??? she is super high!!!!

Check in november

September 2014 vitamin D 38

every other day 1000IU check half decemebr 2014

October 2014 her function now is 28%!!!! 2 months ago was 20%!

December 2014 pro BNP 64 ref 0 - 263

Vitamine D 70 ng/ml

Mitral valve deficiency improved to 70%

New dosis advise januar 2015 viewtopic.php?f=65&t=11562&p=95667#p95667
These are the values Lara started with one year ago. Compare these old values with the new ones and decide for your selve if she is improving
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 » vr jul 24, 2015 9:38 pm

Willy, you made me smile again!

Yes, she improved a lot, and I strongly believe that is happening because of the protocol, even if the heart didn´t get smaller yet, Lara has the same levels of energy of any other child of her age, and the SF has improved too :)

The thing is that I´m so anxious, I want Lara completly out of danger. Maybe she already is, but as I don´t know for sure I get down.

But, you´ve made me look at the past, and is true that things are better, and Lara is an everyday bless.

I´m very thankful for that, and for all your help :)

Thank you so much!!!

Ale.

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

Bericht door Aleta » wo jul 29, 2015 8:00 am

Hi Willy and Corrij, I hope you are doing fine :)

I have a question about new supplements for Lara. We aready got in touch with this family friend who travels a lot, and can get them faster that amazon, buet his is gonna travel next week or so, and I don´t know exactly when he´ll be back.

Lara has to make her BNP test around august 7, in order to wait a whole month since enalapril was increased. After we made the test we start the new supplements, don´t know exactly when either.

Now we have a friend who is in US and comes back next week, he can bring some, but as we don´t want him to get any trouble in the airport, because maybe the agents think the supplements as a medicine and don´t let him pass with it, we´ll gonna ask just for one, and start with that after BNP test.

Soooo, after this long explaining (sorry) we wanna know wich one buy first. What is more important to start with sooner, Ubiquinol or Acetyl L-carnitine?

I have the believe that Ubiquinol, but I´m not sure if I´m right...

I´ll wait for your advice.

Have a good day!

Ale.

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

Bericht door sasje1903 » wo jul 29, 2015 8:24 am

Aleta

Have you looked at www.iherb.com ?
I order some there And have them at home in a few days!!!

Best wishes
Saskia

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

Bericht door Willy » wo jul 29, 2015 10:34 am

Ubiquinol
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 29, 2015 4:39 pm

Ubiquinol then!

Thanks Saskia!

Our problem is not the website where we buy things... A few years ago the goverment put some restrictions to import and export in order to make the nacional industry grow (wich has not really happened), after that, put restinctions on the purchase of import products via ebay, amazon, etc. and the ones you bring from a trip, and the big boxes received via mail too.
When you arrive to the airport with things you buy on a trip, maybe you´ll have to pay a tax and that´s it. But as the supplements could be consider medicaction, I don´t know.
And as the internet purchases, before this, people get the products in the house door or the mail office, maybe if was a lot of stuff, pay some tax. Now all goes to customs office, the tax is no problem, but is one hour from home and 4 hours of waiting, and if they consider supplements like meds, we have to get a doctor certificate, fill a form, etc etc etc.
If we need to, we´ll do all of this, but if we can avoid it, much better.
This country has amazing good things, and some others, stupid and enoying like this...
I hope with the new goverment this change :(

Thank you!

Ale.

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

Bericht door Aleta » do jul 30, 2015 9:55 pm

Hi Willy, we are about to buy by amazon this two items, We want to give lara 150 mg of ubiquinal to mantain the dosis that the doctor prescribe to her. This are the brands we want to buy, it´s ok to give her 100mg of one brand and 50mg of the other brand to reach the 150mg per day?

(ubiquinol 50mg x 60 soft-gels):
http://www.amazon.com/Best-Naturals-Ubi ... inol+50+mg

(ubiquinol 100mg x 120 soft-gels):
http://www.amazon.com/Now-Foods-Ubiquin ... 0+softgels

Best Regards,
Aleta and Sebastian

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

Bericht door Willy » wo aug 05, 2015 10:31 am

Both are effective supplements. Look at my dosis advice and to the dosis Saskia gives to Emma

Q10 is very safe so over dosing will not cause harm to Lara. But a high dose will cause problems for your bank account :D
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 Argentina, need help

Bericht door Willy » ma aug 10, 2015 10:50 am

Are there any lab test results?
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 » ma aug 10, 2015 3:36 pm

No, i'm waiting for them today, so I'm freaking out as you can imagine.

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

Bericht door Corrij (therapeut) » ma aug 10, 2015 4:14 pm

Hi Aleta,

Don`t be so scared. What you believe will happen!
Try to stay as possible as you can :D
Lara is doing great, agree?

The saddest summary of life contains three descriptions: could have, might have, and should have.”
Too often, we allow fear, worry, and doubt to dominate and define our lives. We allow them to steal our joy, our sleep, and our precious dreams.

Fearful thoughts attract more fear. Positive thoughts attract success. Instead of expecting the worst, train your mind to expect the best.

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 aug 10, 2015 4:27 pm

Thank you Corrij, I{m starting to believe in that.

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

Bericht door Aleta » ma aug 10, 2015 4:39 pm

These are the routine blood test, this part came first.

https://translate.googleusercontent.com/translate_f

let me know if the link works.

Ale.

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

Bericht door Corrij (therapeut) » ma aug 10, 2015 4:47 pm

Hi Aleta,

No he didn`t work,

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

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

Bericht door sasje1903 » ma aug 10, 2015 10:23 pm

Corrij

I love your positive speech! Hoe beautiful written!!

Saskia

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