Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

Beta blockers restrict higher heart beats, so..................

If she does more (or is a little bit sick) here heart does not respond with a higher frequency, that will cause a little oxigen shortage and faster breathing

Check this hypothese with your cardio tomorrow

[Aleta]

I will. I'll ley your know tomorrow.
Fingers crossed!

Cheers!

Ale.

[Aleta]

Hi Willy!

Lara had her check up with cardio. Things are the same, no changes, Which is always good not to hear "worse".

Doc said that Lara get shortness of breath because the left atrium is so big, that the ventricule has to do an extra work and then she gets fast breathing. She said that the breathing is that and not get to much worry about it. She was even surprised watching Lara so active in the office.

The atrium is big, but the mitral valve not that big as could be compare the size of the atrium.

Now encrease Enalapril from 1,25 mg to 1, 65 if I´m correct. Also we still have the same dosis for spironolactone but she can have it all at once.

And fursemide keeps the same until winter and colds get over.

Doc thinks that Lara has the chance to get cured, or get a little better to be stable and get to 10/30 years, and then we´ll have a lot of new treatments. BUT we´re really counting on the protocol, because the first improve was after start it.

About pro BNP, she said that this is not a good moment because is swiching meds or encreasing the dosis, she wants to wait, and besides, watching the fast breathin she knows is gona get a high result.

Obut chrismas is gonna be the best moment :S

So, this are the knews.

I´m gonna make an order for ribese and vitamine D3, if you want us to buy something more, just let me know.

Cheers, Ale.

[Aleta]

Hi Willy!

How are things there? I hope you are doing well

I forgot to mention that we saw the genetist, we started the papers to send samples to US to check genes, Here we don´t got the panels
That day in the office was the assistant of methabolic doctor, and we asked him about carnitine dose, he said you should encrease dose to 1gr. That dose should be until she gets 11 kg. And a blood test around end of the year.

We have cardiologist appointment next week, july 23. I think she is gonna increase carvedilol or enalapril, she wants to see Lara often until she gets the right dosis, and wait for BNP because is not a good time when the dosis are changing.

What I don´t know if she´ll ask for a BNP or a pro-BNP. The ones we did are all just BNP, not pro. Is not the same way of measuring, right?

Things are quit, luky for us. Lara is becoming a little girl and leaving the baby bahind, is very smart!

The pediatrician found Lara (2 days ago) very good, heard the heart more quit and strong and no murmur, let´s see what the echo says.

She gained 250gm more, now she weighs 9,700 kg and 81cm tall.

This are the news.

Hugs, and please send my love to Corrij.

Aleta.

[Corrij (therapeut)]

Hi Aleta,

This is Corrij thank you for your nice words you`ve send me in a e-mail earlier

Independent of their diagnostic value, several large scale studies have convincingly shown that BNP and NT‐proBNP provide strong prognostic information for an unfavourable outcome (death, cardiovascular death, readmission or cardiac events) in patients with heart failure or asymptomatic left ventricular dysfunction.8 In multivariable models BNP and NT‐proBNP proved to be superior to other prognostic parameters and in some studies even to be the only independent prognostic factor. Head to head studies comparing the diagnostic performance of BNP and NT‐proBNP testing have been performed in patients with heart failure and in patients with asymptomatic left ventricular dysfunction. They revealed that both markers performed equally well with almost identical areas under the curve (AUC) of the receiver operating characteristic (ROC) curves. Thus, it can be concluded from those studies that there is no meaningful difference for risk stratification in clinical routine between the two markers.

Fine to read that Lara is doing great,

greetings,
Corrij

[Aleta]

Thank you Corrij, is nice to read you again

[Willy]

I am still on my boat in germany, the engine broke so we are in norddeich one week for repair

Carnitine to 1000'g was the advise of your doctor.

How much is she using now?

Corrij are we going to change the Q10 powder for a gel based Q10? If so which one and what dosis?

[Willy]

The dosis we can calculate from our experience with Dutch children.

I think we must change!

[Aleta]

She is on 1000 mg or 1g now, 500mg at mid day, and 500mg at night, both times with the magnesium

I hope you are enjoying while they repair the bote!

[Aleta]

And 150mg of Qq10 (ubiquinone) at night before milk.

She is having just 2 bottles of milk now and eating more solid food

[Corrij (therapeut)]

Hi Aleta,

Is it possible to get the ubiquinol?
What is her weight at this moment?

greetings,
Corrij

[Aleta]

Her weigh is 9,700 kg

I´ll try to find ubiquinol here, if I don´t get it I´ll gonna buy it on amazon with ribose and D3 in a few days. The thing is that in order to aboid the comercial office we have to ask for the suplements to a friend, and that´s gonna take a month or so.

I´ll see wath is here on the market and post for you the links with products.

Have nice day! (is 9:42 am here )


Ale.

[Aleta]

I´m asking if is available this one, is a good product, right?

http://ar.evitamins.com/ubiquinol-200-mg-now-34328

[Willy]

It is a good product but the dosis 200mg is a bit high.

We give an adult of 70 kg 200 - 400 mg per day

2,86 - 5,71 mg / kg for lara this means with 10 kg

30 - 60 mg per day, since q10 is extremely save I would go for 60 mg

The now product is a bit to high. Try to find 90 mg or 3 x 30 mg, because if you sqeeze them out, always some q10 will stay behind

What do you think Corrij?

[Aleta]

Hi Willy!

Decrease the dose scares me. Can we still give her 150mg but changing ubiquinol from ubiquinona?

I also found acetyl L-carnitine 500 mg in Vcaps, I´m waiting the seller response.

NOW Foods Acetyl L-Carnitine 500mg, 200 Vcaps

Is a good product too?