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.

[Willy]

Alete I am 75 years old now. I started with Lara 10 years ago

I had some health issues in 2023/2024

Did you know that you wrote me almost 500 messages

I will speak slowely tomorrow and wait until you translate for Lara

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 was difficult to understand. I know now what you mean.

See you and Lara tomorrow

[Willy]

Hello Aleta

Is Lara no longer taking medication? How often are there checks in the hospital? Blood tests? For example NT-pro-BNP or BNP. Maybe an ultrasound too?

Which supplements does Lara use and what is the dose per day? How much does she weigh now?

[Willy]

I placed this text on my facebook https://www.facebook.com/PillieWillie/

Is this oke for you?

You can respond if you like

Maybe other mothers will see this post and contact me

CURED FROM CARDIOMYOPATHY
Lara Buenos Aires Argentina

Almost 10 years ago the mother asked me: "Baby girl, dilated miocardiopathy from Argentina, need help"

More than 1000 messages later, she is now cured. I saw her for the first time on Tuesday January 23 via WhatsApp video.

She was 10 years old. We both cried. She has a new life ahead of her and I am going to say goodbye to her

Here you can see what has happened in the last 10 years.
viewtopic.php?f=65&t=11562&fbclid=IwAR1 ... z27og3TNMc

It was what you call a BUMPY ROAD

[Aleta]

Hi Willy!

im so sorry for not reply before, I didnt got the forum notifications, Saskia told me about your post!

Thanks a lot for calling Lara, it meant a lot for all of us, and thank you for be here with us all this years. Lara knows about you and she is very grateful, she values averyone who cared for her.

We have no BNP test in a while, but this is the last echo we did. She hast check up every six months:

- 5/12/23
S-D-S cardiac segments. Normal RV.
- Auricle I slightly dilated. AI 24 mm. No passage through the septum is observed
interatrial.
- Normally implanted AV valves, IT gte of 25 mmHg. Trivial to mild MI. ring
21-22 mm without stenosis.
- I ventricle slightly dilated and globose. Decreased septal thickness DIVD 4.8 mm
PPD 6.6mm. LVDD 45 mm LVDS 31-32 mm FA 31-33%.
- Normally related vessels. Free exit routes. Valves of normal morphology.
- Normal aortic arch. No ductal flow is observed.

Conclusions MCD, mild MR. Systolic function in lower normal range. Stable

Cardiologist always saids that Lara is recovered, no all cured because she has this "globose" shape that seems the to be the scar of what she went through.

About the supplemets, she is with L Carnitine 500mg in the morning and 500mg at night, ubiquinol 150 mg per day, magnesium 100mg in the morning and 100mg at night, Ribose I cant remember the dose, I give one size in the morning and one size at night.
Lara weigh is 33 kg

carnitine and cQ10 was prescribed by a children metabolism doctor at the very begining, because some acids were in a rare values. We might have to repeat those test to take her off, but as is part of your protocol and Lara is doing so well, Im scare of any change.

She TAKES NO HEART MEDS.

Now she is begining her puberty, so we are kind of alert. the last check up was the same values than the previous one in june, but the previus 3 or four check ups the fuction was going a little down every time.
Our cardiologist said thas was not to worry because in other asocts the heart was great and that is not the only thing she consider to say if she is fine or not, maybe was puberty geting closer.

Thing is, at this moment and I hope forever, Lara is doing normal life for her age.
I truly believe that you helped that to hapen.

THANK YOU

[Willy]

I'm going to recalculate what Lara needs in supplements. We have not increased the dose in recent years. But her weight has increased. Here you can read more about the dose for children per kilo viewtopic.php?f=121&t=11650

The dose for the supplements will then increase. But is good for a girl who weighs 33 kg.

We will then keep this dose. We then no longer compensate for her weight gain. The six-monthly check-up then indicates how she is doing on this fixed dose.

Do you think this is a good plan?

[Aleta]

Hi Willy, Im so sorry for the daly in the response.

I dont get the email with the notification about new post or reply in the forum...

I cant see the link in your reply aobout the weight, it leads me to a page that says Je hebt geen toestemming om dit forum te lezen.

Is that I need a permission to read?

I ll be cheking the forum for your reply in case I dont ger the mail again...

Best

Aleta.

[Aleta]

Hi again Willy!

I´m sorry, Lara´s weigh is 38,6 kg

[Willy]

Does she use Taurine or selenium?