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

Geplaatst: di jan 19, 2021 9:27 pm
door Willy
Does the cardio already dicide to give Lara less medication?

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

Geplaatst: di jan 19, 2021 11:59 pm
door Aleta
HI Willy!

So glad to know from you!

Lara´s birthday is on saturday, Jan 23. 7 years already!
I great to know that your family is fine, even with mild covid.

Lara is on NO medication, only supplements.I believe a year and a half already... When we can and things are less complicated with covid, cardio will make blood test to see if those acids are still high, the ones that metabolism doc saw and prescriber Qq10 and Carnitine as a baby.

Is getting hard to get some supplements because the travels decreased but somehow we handeled, now I got Dr Best L Carnitine and waiting for a new bunch.

Take care a lot, always thinking of you and your family!

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

Geplaatst: za feb 13, 2021 11:06 pm
door Willy
I missed here birthday but I Will make a note in my diary and will not miss the next ONE 8 heats old

Excellent that she is on NO MEDS now

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

Geplaatst: za feb 13, 2021 11:09 pm
door Willy
Aleta schreef:
zo aug 03, 2014 7:11 pm
Hi, I´m from Argentina. I´m sorry but I don´t know dutch at all, I can write to you in spanish or english, so sorry.
I have a daughter of six month who has diagnosed with dilated miocardiophaty, with a sever left ventricular dilatation and 20% of function.
She is at home, but receiving treatment with enalapril, carvedilol (twiace a day), spirnolactona (3 times a day) adn fursemida (4 times a day).
I´ve found the Children's Cardiomyopathy Foundation Community, and one of the members of that group, told me about you and and the supplements her daughter takes, I would like to learn more about that, to talk to my cardiologist and maybe get my baby better.
I´m sorry but I´m so far away from you that this is the only way to conect you.
If you need to know something more about my baby diagnosis (Lara), let me know.
Thanks a lot for you time
This was your first message 7 years ago

Time flies but we did it Aleta! Lara will live a happy life

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

Geplaatst: zo feb 14, 2021 3:47 am
door Aleta
You made cry happy tears!

Thank for all you do for us!!!