Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

Hi, Corrij and Willy!

Yes, I believe is more acid the saliva, that causes more irritation too.

So, is not necesary stop or reduce the magnesium? I feel scared about stop for a few days some supplement...

[Corrij (therapeut)]

Hi Aleta,

You can reduce the amount for a few days, give her a little more fluid as well.

greetings

[Aleta]

ok, thank you so much!

[Aleta]

Hi Willy and Corrij!

Just checking in.

Lara had padiatrician appointment last week, the ped has very happy about Lara{s developing, she gained 200 gr in a month, and most important: the heart sounded a lot better than the last month. The murmur is almost unperceptible, and the heart sounded very strong. She thinks that in the next check with the cardiologist we´ll see more improvemet. I HOPE SO!!!

Lara is moving a lot, walking around the house, climbing everything she can, opening all the doors, etc. We hope she keeps growing that beautiful and strong.

The diaree is gone, so we are giving 1/3 of magnesium twice a day.

Tomorrow we´ll gonna do a little trip to the beach, 3 or 4 days, so Lara is gonna meet the sea for her first time! and is gonna be our first family trip the four of us, we are axited.

Next week Benjamin starts school, I´m in panic (yes) that he get virus or something home; but this year both sibilings are stronger I guess.

And Lara needs her vaccines of the year, are living virus, so panic for fever too. Also she is gonna get Synagis.

Anyway, it´s been a great summer, my favorite time of the year. Now is your turn for a little heat, right?

I wish you are doing ok.

Cheers!

[Willy]

That is all good news.

I think Lara will get better. Vitamin d protects here a bit for virus attacks

[Aleta]

Hi Willy and Corrij!

Panic week has started, Lara has cardiologist this thursday. Is not that I´m see her bad, but is a stressfull moment.

Last week we saw the metabolism doctor who said that if Laras´s CM is genetic, she´ll never get cure because her genetic make up, meds will only help a little... We get emotional exausted everytime we go to the clinic.

I´ll keep you posted.

Regards,

Aleta.

[Willy]

The first child I cured together with Corrij was Dion with a genetic problem

He is after three years completely cured

Do I make you smile again

So I disagree with your docter on this point

Time will tell who is right

But Lara can now already tell you who is right on this

[Aleta]

Yes you did made me smile. And Lara looks great, I hope her heart does too this thursday

(I have more faith than before, she is so awesome)

Thank you for ALL

Cheers

Aleta.

[Aleta]

Hi Willy and Corrij.

We had our appointment today with the cardiologist. Th Shortening Fraction went down from 29 to 24, the mitral valve is working the same, with %70 of defficiency, and the enlarged part of her heart grew along with the rest of the heart. No more dilated, just grew all the heart.

It´s been trhee month since her last echo, a lot. In the meantime we raise uo carnitine, Ribese an magnesium. Is this mean that the protocol and the meds are not working on her?

The doctor told us that we shouln´t look at the numbers, intead we have to see that with her poor function she is growing and doing ok.

But her condition is still severe, so I´m very scared. It´s been 9 months since diagnosis and 7 since protocol, and she is still the same, had little improvements but always been severe and is not changing yet for better.

I don´t know hot to feel or think, I´m very sad and losing hope, I hope to be better for her tomorrow, I just don´t know what is going to happen with my girl

Whell, this are the knews.

Regards,

Aleta.

[Willy]

What is the pro-BNP and EJF value?

[Aleta]

They don't measure bnp, and measure shortening fraction, not fraction of ejection ...

[Willy]

The Shortening Fraction went down from 29 to 24

That is an improvement 17% IN ONLY THREE MONTHS

It´s been trhee month since her last echo, a lot. In the meantime we raise uo carnitine, Ribese an magnesium. Is this mean that the protocol and the meds are not working on her?

So wrong conclusion

[Aleta]

But shortening fraction must go up, not down. Normal range is between 30-50 for childrens.

[Willy]

I remember again the shortening fraction method, that is a two dimensional method of measuring the heart performance. The EJF requires more computer power since it is a three dimensional method

But the shortening fraction must go up, you are right

Here you have an overview of the last months viewtopic.php?f=65&t=11562

Could you get an pro-BNP value to check this?

Until now we had a slow recovery with symptoms and diagnostic values

So.......................................

It would help to get the pro-BNP value. If this value is still the same or lower then we have to wait for the next echo

If pro-BNP is higher we have to reconsider the dosis of the supplements

[Willy]

It would also help if you put all the values for pro-BNP and Shortening fraction WITH THE DATE when it is measured on the forum so we can follow these diagnostic markers more easily