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.
Aleta
Verslaafd aan het forum
Berichten: 489
Lid geworden op: zo aug 03, 2014 6:39 pm

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

Bericht door Aleta » ma dec 03, 2018 2:45 am

Not for now, but I wonder if those acids means that Lara counld never leave supplements.

Willy
Verslaafd aan het forum
Berichten: 13714
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

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

Bericht door Willy » di dec 04, 2018 7:56 pm

That might be possible. But that is not a big problem, the sups are healthy :D
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 489
Lid geworden op: zo aug 03, 2014 6:39 pm

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

Bericht door Aleta » di dec 04, 2018 8:30 pm

I love to read "that is not a big problem"!

Willy
Verslaafd aan het forum
Berichten: 13714
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

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

Bericht door Willy » vr dec 28, 2018 6:27 pm

Lets do a Face Time in Januari 2019

How about that?
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 489
Lid geworden op: zo aug 03, 2014 6:39 pm

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

Bericht door Aleta » vr dec 28, 2018 6:34 pm

Sounds great, jan 16 she has pediatrician appointment, we'll tell you the knew. On jan 23 she turns 5 years old!!!
Have an amazing 2019, you deserve all the best of the world!

Willy
Verslaafd aan het forum
Berichten: 13714
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

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

Bericht door Willy » zo dec 30, 2018 3:39 pm

On her birthday looks fine!! If you are not to busy otherwise an other day

You are 4 hoiurs earlier then we are

Time Holland 14:00 = time BA 10:00
Met vriendelijke groeten,

Willy Witsel

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

Willy
Verslaafd aan het forum
Berichten: 13714
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

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

Bericht door Willy » wo jan 23, 2019 11:10 am

Congratulations with Lara

is your number +54 11 60415424?

I will try to call you via whats app today
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 489
Lid geworden op: zo aug 03, 2014 6:39 pm

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

Bericht door Aleta » wo jan 23, 2019 6:37 pm

Thank you! is Sebastian's number :)

Willy
Verslaafd aan het forum
Berichten: 13714
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

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

Bericht door Willy » za apr 27, 2019 8:04 pm

How are you Aleta and how is Lara?

recent check up?
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 489
Lid geworden op: zo aug 03, 2014 6:39 pm

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

Bericht door Aleta » za apr 27, 2019 8:28 pm

Hi Willy, great timing!

Our check up is may 3, next friday. Already freaking out.
She looks great with lot of energy but this year started preschool 7 hours at day, I hope this wont be too much for her.

I'll thell how it goes, and thank you for think about us!

Aleta.

Willy
Verslaafd aan het forum
Berichten: 13714
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

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

Bericht door Willy » vr mei 03, 2019 9:31 pm

Ofcourse I Think about you and Lara

How did The checkup go?
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 489
Lid geworden op: zo aug 03, 2014 6:39 pm

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

Bericht door Aleta » vr mei 03, 2019 11:48 pm

Hi Willy!

Lara did great at check up, the numbers are still the same,
her left atrium and ventricle are still dilated, but very little. Cardio told us that the atrium probably is bigger than normal in consequence of the mitral ring that had to be reduced in the surgery. The valve is good and the size of the ring too. The valve always had a mild deficiency after the surgery but today she said "less than mild".
The ventricule has a few milimiters more in a spot and less in other, so she told us that is a minimun measure variation.
The same with shortening fraction, today was 35%-37% and it's been several check ups that had been the same measure (34%-36%), so it's a little better but she said that also could be a measure variation or a variation that we all have. (i'll take it like she is better).
So, her heart is mild dilated, but has a globose shape, this could be like the scar of the severe dilatation she had, and that Lara can be with this shape forever, but she needs to be watched in special when she gets puberty.
Maybe at twelve or something she orders a MRI to see whats going on with this globose shape.
it's like a different geometry explained to us, she could live with this geometry until 80, but we'll have to watch what this geometry does.
Also told us that in puberty function tends to get down, but she thinks that Lara will be fine even if that happens, but of course we'll have to wait and watch. She has no reason to think that Lara could get worst but can read the future either. Also is the hormones things and the body getting to the adult size.
Still the same dose of Enalapril, she will not take off the medication for now, but will not raise the dose either.
the cardiologist is happy with the recovery of Lara, said it is a "privileged".

So.... I believe it was good! I think I need that some day cardio say "it's cured, don't come back!", just to get all my fears away, but this is pretty amazing too, and I'm so grateful, and there is not a single day that I do not thank for have met you, our doctors, our friends and Lara's strenght.

Back in six months for check up and in the meanwhile I will continue to thank and see Lara growing.

Thanks for be here for us! I hope you are doing great!


Aleta.

Aleta
Verslaafd aan het forum
Berichten: 489
Lid geworden op: zo aug 03, 2014 6:39 pm

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

Bericht door Aleta » ma jun 03, 2019 4:45 pm

Hi Wiily, I hope you're doing great.

I have a quick question, Lara is having 42mg twicw at day (84mg total), of magnesium. We use jigsaw health magnesium which is magnesium malate. I'm having truble getting that brand. Now foods os ok? Is there any other brand?
She hast to take malate or can have magnesium oxide now?

Willy
Verslaafd aan het forum
Berichten: 13714
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

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

Bericht door Willy » za jun 08, 2019 9:22 am

Magnesium oxide is the wrong choice

Magnesium malate or citraat are good options

Why did we decide to go for JigSaw magnesium time released? Diarree?
Met vriendelijke groeten,

Willy Witsel

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

Willy
Verslaafd aan het forum
Berichten: 13714
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

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

Bericht door Willy » za jun 08, 2019 9:29 am

So.... I believe it was good! I think I need that some day cardio say "it's cured, don't come back!", just to get all my fears away, but this is pretty amazing too, and I'm so grateful, and there is not a single day that I do not thank for have met you, our doctors, our friends and Lara's strenght.
We are an excellent team all these years since you wrote

Baby girl, dilated miocardyopathy from Argentina, need help

Are there Amy changes in the medicine? Lower dosis, stoppen?
Met vriendelijke groeten,

Willy Witsel

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

Plaats reactie