Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

Does the cardio already dicide to give Lara less medication?

[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!

[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

[Willy]

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

[Aleta]

You made cry happy tears!

Thank for all you do for us!!!

[Willy]

How are you and how is Lara?

[Aleta]

Hi Willie!

Sorry for the delay in responding, this was the first week of school and it was crazy.

I hope you are very well, we always think of you!

Lara is fine, she has control with cardiologist every six months and still does not meds. About june 2021 shortening fractiosn dropped 36/39 to 34/35 and remained there. The cardiology told us that there is no difference and that it is not to worry.
The only restriction is still food with a lot of sodium.
She is with same dosis of supplements.

in june 2022 we had covid, but heart still fine. Lara has 4 vaccines already. (2 sinopharm and 2 pfizer).

What kept us busy was that we had to do an elongation of radio that involved two surgeries, one to put a tutor and another to take it out, and after that we continue with rehabilitation because the articulation of the wrist does not remain very well and she might need another surgery it in the future. Last year was crazy.
This happened because when she was in neonatology, a bacterium enter through aa small wound in the wrist and the forearm bone growed slower than the other.

Luckily, Lara's heart remained well despite operations and could make a normal life, at the end of 2021 began to practice horse riding twice a week and rides beautifully, she is very happy with horses.

So those are the news.

I hope we are fine! Thank you so much for everything always!!!

Aleta.