Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

good night!!!

[Willy]

I was very busy the last days. A man 67 years old was sent home from the hospital with the message that he would die in a week from heart failure.

But I think he will make it.

About the magnesium chloride. This product is for oral use. I was hoping that you could buy magnesium chloride which is designed to be used in a bath.

I have to ask a specialist about this product.

[Aleta]

oh I`m so sorry, I hope he is dooing better

About the agnesium Lara is doing ok with pills, I hope she don`t have to change to liquid :/

thank you!

[Willy]

oh I`m so sorry, I hope he is dooing better

His pro-BNP improved 17% in one month!

Oke still no diaree. I will try to find out kore about your magnesium chloride product

Do you now when Lara will get her next heart echo?

Do you know her blood CRP value?

[Aleta]

The next echo is dic 10.

I don't know what CRP blood value is, but I'll cheçk in the blood woork we have.

What is that?

[Willy]

CRP shows the level of systemic low grade inflammation in the body

[Aleta]

I've just sent you by mail the tests we found. I don't know if that is what you need.

[Willy]

I received the mail

These are the result of tests on infections, no infections detected

This is a description of CRP http://en.m.wikipedia.org/wiki/C-reactive_protein

[Aleta]

OK, should we ask for that when we do proBNP and vitamine D? How do we ask for? Just CRP test?

[Willy]

Yes if possible. Do a translate of the wiki page to see the Spanish name for CRP

[Aleta]

OK thank you!

[Aleta]

Willy, today I knew about a baby of 13 months with DCM who passed away, he was doing great with 43% EF, he was on Qo10 and carnitine, he went into heart failure, how could that be?

I´m so so sad for him and his family, and so freak out about Lara...

I´m feeling that we are not save...

I just had to share this, I don´t know what you can tell me about it, I´ve just got very scared!

[Willy]

We do more then that, see this movie

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

[Aleta]

yes, I know. But all the time doctors remind me that every child is diferent, I´ve got scared that things don´t work out for Lara

Sorry, I´ve panic. I´m better, I even started to work a little, the days are going a better, but at some point I remember what is going on, and is the closer I can describe hell.

At the day we know her condition is "severe" but don´t know how enlarged the heart is, we got the numbers on the report, but not clear what means... and the waiting to get smaller is long.
Our doctor don´t explain to much, we don´t know if she don´t want to scare us or what.

I´m sad for that family, they are living my nighmares, so sad.

this s**ks

Thank you for everything and for be there always!

[Aleta]

Hi Willy!
Today I had a chat with my mom, and told me that my grandma alwais said that she had a "big heart", I did´t knew that, only that she has heart issues. She passed away at 82.
is not sure, after she passed the medical paper were throw away, and the family don´t know exacly the cardiopathy she had.

So I´, thinking this could be a familiar stuff, this could mean that would be more diffucult to cure Lara???

Also today we saw Lara´s ocupational terapist, she follows her development as she born premature, and she is doing all the thing expected at her age, and have a lot of energy, that is the highlight of the day

cheers.