Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

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

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

I wanted to tell you, for your records, that Lara started yesterday (2015 August 12) Ubiquinol

[Willy]

Hello every thing seems to work

From now on you only give new reactions NOT a new topic anymore

If you give an new reaction you can request before you post the message an email signal when there is a reaction. Inthat way you do not have to look on the forum to see if there is a reaction available

You will get an email signal

Is this clear?

[Aleta]

I think I understood, thanks

[Willy]

Hello Aleta and Sebastian we had a long skype discussion on august 1

We will discuss things now via this forum. This was the email I send to you based on our discusion

Let's work from here

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Why are you doing this you asked

The answer is simple: Because I can

In Holland I would visit your child once to see how she is. I do that in The Netherlands. That is enough for me. I gave a child its life back

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HOME WORK

What is the cause of the CMP? Virus, genetics, mitralis valve, unknown?

Is mitralis valve problem the cause or the consequence of the cardiomyopathy

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Since your dougther is not critically ill we have to measure progress during my treatment using the diagnostcs of the cardiologist.

EJF currently 20% out of 30% Echo
Heart size Echo
Pro-BNP blood test

I looked pro-BNP up in wikipedia. See for fulle name and desription

http://en.wikipedia.org/wiki/Brain_natriuretic_peptide

If the pro-BNP gets lower then that is the first sign the protocol works

After one year you normally see the EJF go up

After 1 - 2 years the heart gets smaller

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You have to inform your cardiologist that you give your doughter supplements. Do not tell her that you want to cure her with supplements. That will make her angry and frustrated. Tell her only that you want to give her some supplements. If she askes "what supplements" tell her Q10. She surely knows about Q10 and the good effect on heart failure.

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I want you to search for the following suplement

Q10 30mg (during skype I said 100, but I looked it up was wrong)
Acetyl-l-carnitine 500mg (idealy would be tablet 300mg)
Magnesium 100mg
D-Ribose powder

I want to see the manufacturers who produce it. Take big manufacturers like Solgar, Healthy Origin, Pharma Nord

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We start with Q10 and then proceed after a couple of weeks with carntine etc

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HOME WORK

You have to study the protocol pages Q10, carnitine, Q10 + carnitine, magnesium and d-ribose

http://translate.google.nl/translate?hl ... index1.php

Look at this youtube film

https://www.youtube.com/watch?v=-7sh7wFZe6M

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Tomorrow I will register Aleta on the forum

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QUESTIONS?

[sasje1903]

Hi Aleta,

Welkome and so glad you got in contact with Willy and he is helping you!!!

We give Emma
d-ribose from Healthy Origins
Ubiquinol (coq10) from Healthy Origins (iTS a 50mg capsule but Willy have to agree to this maybe dont give all of it)
magnesium from vital cell life (could be an european brand)
lCarnitine we have from sigma tau (liquid)

Willy and Aleta, we orderd Some supplements from the USA at www.mynaturalmarket.nl dont know if you are Able to order there from Argentine, and maybe Willy can advise you with Some products...

I Will support you anytime!

Please read everything Willy told you, iTS really helpfull to know how you treat your daughter and what to tell you cardiologist if she is going to ask hard questions!

Be strong Aleta!!!

Best regards Saskia

[Aleta]

thanks, I will look at it! now she got a little fever, I need to find out why

[Aleta]

saskia, i can´t find your topic

[Willy]

The results are posted here bij Saskia

viewtopic.php?f=106&t=11522

The treatment topic is on secure closed forum

[Aleta]

Willi, this is the trand I found here (I´m still locking for more), if is no good I can buy outside the contry
http://biovea.net/AR/results.aspx?AG=Co ... 7AodWxEAHg
But we still didn´t talk to the cardiologist, we´ll see her on wednesday, and tommorrow we have appointment with the child methabolism doc, I guess she would know about this too.

[Willy]

From the list of ingredients I saw this

Otros Ingredientes: Harina de arroz, estearato de magnesio, celulosa.

I expect therefor that this product is NOT an oil based Q10

If so it is a BAD product

You have the important questions for the cardiologist, see my earlier post on this

[Willy]

Pro-BNP blood test

You have to inform your cardiologist that you give your doughter supplements. Do not tell her that you want to cure her with supplements. That will make her angry and frustrated. Tell her only that you want to give her some supplements. If she askes "what supplements" tell her Q10. She surely knows about Q10 and the good effect on heart failure.

What is the cause of the CMP? Virus, genetics, mitralis valve, unknown?

Is mitralis valve problem the cause or the consequence of the cardiomyopathy

For your cardiologist

[Aleta]

Hi Willi, we went to the chidren methabolism dr today, we have to reapit some tests to discard a methocondrial disorder, she thinks that Lara don´t have it, but some levels are high. So, without even ask she told us to star to give Lara Q10 150mg, and Carnitine 10 ml each day. She thinks that that may help her heart muscle. We have to ask the pharmacy to prepare the pupplements in laboratory. We ask about magnesium and D-ribose and she didn´t think that Lara need it. We´ll try harder tomorrow with the cardioilogist, anyway, we have to give her this ones firs right? we got some tiem for that? also give her Supradyn, is a complex of vitamins.
We were so happy that we fogot to ask about BMP test, but we´ll do that tomorrow. Just letting you know the news!

[Aleta]

It´s carnitine 2,5 ml twice a day!

[sasje1903]

Hi aleta,

Glad you can start with these supplements allready!! The q10 is really high dose and lucky you said the carnitine is only 2,5 since Emma gets 5ml!!!
If you over dose carnitine you could get diarrhea we had that with Emma.. So keep that in mind...

Good luck tomorrow with cardiology visit!!!

Fingers crossed!!

[Willy]

This is the FIRST TIME EVER in my experience that a docter gives Q10 and carnitine for this condition

EXCELLENT

The q10 dosis is high as saskia explained already. But Q10 is extremely safe so do not worry

What kind of Q10 is she giving to your child? Can you ask that?

This is how you calculate the dosis if you use standard over the counter supplements

For an adult 200 - 400 mg is fine. If he weighs 70 kg that means

2,85 - 5,71 mg / kg now you can calculate the dosis for your child

What is her weigh in KG?

How much miligram carnitine is 2,5 ml ??