Baby girl, dilated miocardyopathy from Argentina, need help

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Tinus1979
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Tinus1979 » wo mar 28, 2018 9:56 pm

Hi Aleta,

Thank you very much for the information! Nice to hear the mitral surgery helped Lara!

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » wo jun 06, 2018 6:42 pm

Hi Willy!
I hope things are doing well over there. :)

Lara had her check up a few day ago, but we went for a family tripo and here we are giving you the report.

Lara is great, her numbers are the same, the shortening fraction is %34-%36 inside normal range. The meds are the same, just Enalapril 1,3 mg in the morning and 0,7 mg at.

The Z-score the last time was 2.3, and now is 2.4. Tha worries me, but our cardio said tha is nothing to worry about because Lara grew 3cm in 3 months, so probably the heart grew a bit but not for the DCM. Even so, I'm worry.

Cardio told us that Z-score is a little big thn normal, and if she didn't knew Lara from before, she woldn't think that Lara has DCM, just a little enlarged like the sports heart. But as she knows Lara's past, she keeps treating her like a DCM patient, but she says that NOW Lara has no DCM criteria except for her past.

I guess this are great news, I'm very happy aboout it, but I know this can be tricky and the Z-score thing keeps me worrie.

We have to go back in november, a lot!!!

We are in the same dose with supplements.

Sending you big hugs!

Aleta.

sasje1903
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door sasje1903 » wo jun 06, 2018 10:51 pm

Great news Aleta!!

We love you all! x

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » za jun 09, 2018 3:37 pm

Excellent she slowly out gowths the DCM, that is what I expected would happen
the shortening fraction is %34-%36 inside normal range
6% to much max SF = 30% :D

Keep the sups on the same level, so she gets per KG a little bit less, we do not correct for weight until november cardio visit

May be a Face Time
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

sasje1903
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door sasje1903 » za jun 09, 2018 9:41 pm

Here i found Some normal values for Left Ventricle fractional shortning

https://www.echopedia.org/wiki/Normal_Values_of_TTE

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » zo jun 10, 2018 2:59 pm

Thank the cardio is correct in huis statement, within normal range

What was this value when we started?
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » do jun 28, 2018 7:57 pm

Hi, Willy and Sas! I didn't get the forum updates, that's why I didn't write back.

Lara's first shortening fraction at PICU was %19, after a round of levosimendan was %20. That was in june 2014, in august we started supplements and in october she got %28.
In December 2015 She reached %30 but she need mitral valve repair surgery. After the surgery she was in %25 and improve a little in every check up, unti November 2016 Lara reached normal range.

The Z-score went down always, but in january was 2.3 and in may 2.4, Cardio says is not relevant because Lara grew up a lot in that summer, but it worries me anyway. Check up in November!!! First time a six month check up, scary.

Thank you so much for everything, you are the best, really.

Aleta.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » vr jun 29, 2018 5:05 pm

6 months is not scary

6 months = congratilation Aleta and Lara

The cardio trusts that everything Will be ALL RIGHT

PARTY TIME !!
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » vr jun 29, 2018 5:06 pm

You made me SMILE

Thank you thank you thank you

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