Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

I´m trying very hard to get her more solid.......... she already eats her almost full lunch and dinner. But still wants her bottle.

I think we are slooooowly geting there, but very slowly

[Willy]

Oke

Corrij will not join us for a while because her husband is critically ill

[Aleta]

I´m sorry to read that... I hope he gets better soon. Give Corrij hugs from me.

[Aleta]

Cardio just called me, I told her about a little shot of breath of Lara, because she don´t stop moving at all.

She said to raise fursemida dosis up to 21mg from 15 that was until today. Check her on tuesday and if everythin´s ok, raise up carvedilol, cause she think Lara has low dosis too.

I hope this helps Lara.

[Willy]

Oke that can happen with medication. Her weight goes up also

The next supplement I want to change IF NESSESARY is Q10. Start looking for a good oil filled capsule with 30 mg Q10. Send me product specifications via this forum

[Aleta]

I found this:

In Argentina only this one in softgels:

http://articulo.mercadolibre.com.ar/MLA ... ftgels-_JM


In US:

http://www.amazon.com/s/ref=nb_sb_noss? ... %2030%20mg

http://www.amazon.com/Life-Extension-Ub ... g+softgels

http://www.amazon.com/Vitamin-Shoppe-Ub ... g+softgels

http://www.amazon.com/Solaray-Ubiquinol ... g+softgels

http://www.amazon.com/BlueBonnet-Ccellu ... g+softgels

All como in 50 mg but one in 25 mg.

[Aleta]

If the one in argentina is good; I´ll buy ir now, because is the last one

[Willy]

It looks oke but I want to ask Corrij's opinion

[Willy]

It looks oke but I want to ask Corrij's opinion

[Aleta]

ok.

can we keep giving Lara q10 prescribed by the metabolism doctor, and besides that one, this new one?

It gives me a little fear decrease so much the dosis she is having (150 mg)

[Willy]

No change at the moment

If it turns out she is not improving I will suggest taking the new Q10 and a new form of l-carnitine

Acetyl-l-carnitine

So you can already investigate if you can buy this supplement as well

But do not change things now!

[Aleta]

no no, wont change anything.

She has already improve SF. You mean proBNP?

[Willy]

The combination, SF and proBNP

We started to look at the supplements because both balues went down

[Aleta]

Hi Willy and Corrij!

I hope you are doing well

we had cardiology appointment yesterday, the dr wanted to see how Lara was doing with more diuretics and then increse carvedilol.

Lara is stilll in 28% SF (great), the size of the left ventricule is a little smaller, but doc thinks is becouse of diuretics, once Lara get betablocker for a few days, size go back to what it was before. We´ll see, we have to go back next tuesday again, doc wants to know Lara well and besides, already increse carvedilol, was on 3,125 mg at day, now is almost 5 mg (is weird this tablet dosis).

One thing doc said is that she wants to keep a close eye on mitral valave, it leaks, no more than before, she told me is the same (even so in the report says 65 defficiency and was 70, but maybe is not enough to say "improve"), but she thinks the valve is not helping the atrium to get smaller.

If the valve doesn´t get better and the rest of the heart neither, or get worse, we should consider to se a sergeoun to repair the valve. but in the future! if Lara´s heart gets better and the mitral valve don´t, we can do mitral surgery at 14 or 15 years. BUT we have to see what happens, maybe the valve gets better

This are the news.

I´ve checked the dosis/weight of supplements and we are ok.

I´ll research for acetyl-carnitine.

cheers!

Ale.

[Aleta]

Oh and I forgot! doc said that for her is the same that Lara´s CM came from birth, virus, genetis or whatever, she has the same chances to get better than any other kid, is not a prognosis mark for her.

And, that Lara is just dilated cardiomyopathy, NOT dilated cardiomyopthy non compacted at all. The traveculations on left ventricule are not much and is nothing to worry about

I hope won´t forget anything this time!

Aleta.