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.
Willy
Verslaafd aan het forum
Berichten: 14722
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo nov 19, 2014 3:22 pm

Perfect
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: 505
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » do nov 20, 2014 7:51 am

Hi willy! We saw the pediatrician today, she found Lara very good. The murmur is a lot smaller, also gain 400gr (8kg now), and she growled 3cm in a month! She is looking good, I hope heart too!

We got the prescription for blood tests too.

Do we have to adjust some dose for her weight? Are we ok with magnesium or is to little? She hasen't been with diaree.

Thank you so much for everything!

Willy
Verslaafd aan het forum
Berichten: 14722
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » do nov 20, 2014 10:56 am

In my calculations I used 8 kg so the doses is fine for now

Lara is now on 2 x 15% of one magnesium tablet. You can try 2 x 25% of one tablet
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: 505
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » do nov 20, 2014 3:57 pm

OK we'll do that
Thanks!

Aleta
Verslaafd aan het forum
Berichten: 505
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » di dec 02, 2014 12:44 am

HI Willy! I hope you are doing ok :)
Lara is now ten days with one half of magnesium per day and she seems fine. now she poops one or twice a day, before it was one at day or every two days, but no diaree!

We were thinking about make the bood test finishing this week, is that ok or you want to wait? Next week we have the cardiologist apointment (scared as hell) and the othe pediatrician and ocupational terapist, so are two busy weeks... after that could be, but is crhismas... it´s ok for you this week?

Lara looks good, she is very active and happy, these past 3 days was a little crying and not too much eating, but we believe that is because of a tooth that is coming (with the other tooth was like this), let´s hope nothing else is happening. Also she want to be only with me most of the times!!! (I got no problem with that).

cheers

Willy
Verslaafd aan het forum
Berichten: 14722
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » di dec 02, 2014 10:55 am

If the cardiologist takes blood samples then this is fine. It is a little bit early after the last test. Normally I take three months in between. We planned to do the test half december but we got an extra test a couple of weeks ago.

But oke. What I would like to see is CRP, vitamin D and BNP

And if possible but not neccesary a heart echo with EJF%

If the protocol works it is always the same pattern, patient feels better, BNP comes down, EJF goes 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: 505
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » di dec 02, 2014 3:57 pm

We didn't do the blood test in between, this would be the first pro bnp since diagnosis. Cardiologist will do an echo december 10, but no blood. So we'll manage time to do it around half of December. No problemthank you!

Willy
Verslaafd aan het forum
Berichten: 14722
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » di dec 02, 2014 4:22 pm

Oke you are right, in october the EJF was measured

TIME FOR A BNP :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: 505
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » di dec 02, 2014 8:38 pm

Ok, blood test this week then.

Don´t you think the protocol is already working since the EF went up? I think/hope it does :)

Willy
Verslaafd aan het forum
Berichten: 14722
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » di dec 02, 2014 11:21 pm

Yes, therefore I expect an improved BNP
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: 505
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » di dec 02, 2014 11:33 pm

It is posible that BNP didn´t improve when the EF did? I ask you because I don´t know...

Willy
Verslaafd aan het forum
Berichten: 14722
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » di dec 02, 2014 11:37 pm

Not very likely, just wait and see, and for the moment.......

Look at Lara

Bed time here
Met vriendelijke groeten,

Willy Witsel

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

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: do mei 19, 2005 10:46 pm
Contacteer:

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » wo dec 03, 2014 12:06 pm

Hello,

Plasma N-BNP (or BNP) and LVEF are complementary independent predictors of major adverse events on follow-up after myocardial infarction. Combined measurement provides risk stratification substantially better than that provided by either alone.

Echocardiography is without a doubt a great help in diagnosing HF because it provides much information related to the disease. Echocardiography allow us to evaluate cardiac remodeling, to identify and quantitate valvar dysfunction, to evaluate whether left ventricular contraction is homogeneous or whether it has segmentary compromise, all important information for the correct diagnosis of HF and its cause. However, none of these data are specific, because they could be present but the patient may not have HF. Our observation showed that left ventricular ejection fraction and the magnitude of left ventricular dilatation may be similar in patients with or without HF and in patients with the advanced form of the disease . Results from the SOLVD studies on prevention and treatment also demonstrate that left ventricular ejection fraction per se does not aid in the diagnosis of HF, because in the 2 studies a reduced ejection fraction (lower than 0.35) was the inclusion criterion, and the only difference observed was the presence of symptoms in the treatment arm of the study.

BNP is a vasodilator neurohormone with natriuretic, diuretic, and antimutagen effects. BNP levels increase precociously in patients with left ventricular dysfunction, as demonstrated in large trials. In the SAVE and SOLD prevention trials, it was possible to observe that in patients with asymptomatic left ventricular systolic dysfunction, among the elevated neurohormones a significant and precocious elevation existed in natriuretic peptides . Vasodilatation promoted by this elevation could be the explanation for the good hemodynamic situation, a fact that could result in the absence of symptoms observed in these patients. When we analyzed which neurohormones were elevated, we observed that natriuretic peptide was the one that had the greatest elevation . So, the dosage of these natriuretic peptides allows us to diagnosis left ventricular dysfunction even when patients remain asymptomatic.

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

Aleta
Verslaafd aan het forum
Berichten: 505
Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » wo dec 03, 2014 5:37 pm

Thank you Corrij, I didn´t knew you was also following Laras´s case.

I can´t even tell you how grateful we are for your help, time and support.

Lara is asymptomatic, she looks great. The last few days she has been a little techy, also she is making the transition from milk to solid food, so sometimes it give us work to feed her. But she is very active and has a lot of entusiasm in learning to walk.

I´ve observe sometimes her breathing is a little faster, when she is sleeping, but I can´t tell if that is a phase of dreaming or a heart problem. Maybe I´m just starting to get scared about next week cardio apointment and BNP! I want to cure my girl, I love her much more every day!

Tomorrow we´ll do the BNP, I don´t know how long takes for results, I believe is fast, maybe in the same day or the other.

Is there any number you espect? She was 2300 at diagnosis time.

Thanks for BNP information, and for been there always!

Willy
Verslaafd aan het forum
Berichten: 14722
Lid geworden op: di okt 09, 2001 3:00 am
Locatie: Exloo
Contacteer:

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo dec 03, 2014 6:02 pm

We do not like to guess. On the basis of an improved EJF one would expect a lower BNP. But we will see
Met vriendelijke groeten,

Willy Witsel

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

Plaats reactie