Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

ok, next week will be a month since last echo and bnp, and a month since raise up enalapril and we started to decrese milk. Is good time to check next week?

(Lara please decide to improve my little girl!)

[Willy]

Yes, but if your docter decides that the period is to short we wait an extra month

[Aleta]

ok, we´ll do it then

Thanks!

[Willy]

You,are quick, I added some extra text

[Aleta]

I´m just online searching for the ingo you gave me about soy! I can get organic soy to make burgers, but I don´t remember if there was another problem with soy besides the transgenic...
I´ll ask the pediatrician now, but BMP is a test that nobody cares in argentina, so it´s up to us I think...

[Willy]

Here is good article from dr mercola

http://www.huffingtonpost.com/dr-mercol ... 22466.html

The essence is that SOY IS UNEATABLE', YOU CAN NOT EAT SOY

You can ONLY eat soy if you ferment it

And then it is like a medicine, only for peaple who have something that they want to treat with soy like the menopause of women over 50

[Aleta]

Willy,

pediatrician said that we shoud wait another month for BNP. I was very stressed about that, maybe if we give more time the numbers improve...

I was thinking, this is the composition of Supradyn, some of this could inerfiere with magnesium?

Supradyn ® CHILDREN
Vitamins A, B1, B2, B5, B6, C, D 2, E, H and PP
Drops multivitamin
Dispensing prescription Brazilian Industry
composition
Each ml contains vitamin A (as palmitate) 3000 IU; vitamin B1 (hydrochloride
thiamine) 2 mg; Vitamin B2 (riboflavin sodium phosphate) 1.5 mg; nicotinamide 15
mg; vitamin B6 (pyridoxine hydrochloride) 2 mg; dexpantenol 10 mg; D-biotin 0.2
mg; vitamin C (ascorbic acid) 80 mg; vitamin D2 (ergocalciferol) 900 U.I .; and
Vitamin E (DL-alpha ethyl tocopheryl) 15 mg. In excipient comprises
glycerin; propylene glycol; polyethoxylated hydrogenated castor oil; hydroxybenzoate
methyl; p- hydroxybenzoate; sodium saccharin; aroma
of orange; scent of lime; scent of banana and demineralized water.


Just a though.


Cheers,

Aleta.

[Willy]

Not with magnesium but with carnitine

Carnitine needs to be given on an empty stomach that means NOT TOGETHER WITH SUPRADYN

[Aleta]

Willi,

Carnitine until las month we gave her with empty stomach and far from supradyn, but right afet carnitine was the milk. Now she takes carnitine with magnesium, 3 ours after milk, and 1 after milk. Always far from supradyn.

Tomorrow morning we´ll meet another cardiologist, it will be an echo and I´m super scared. I hope numbers has improve a little and get more information about Lara´s heart.

I´ll tell you tommorrow how things go.

Regars,

Aleta.

[Willy]

An other echo? That is quick? Why?

I hope Lara lies still this time!

It is almost bed time in England

[Aleta]

We wanna know another cardiologist, just to have another opinion an get some amswer that our currently doctor don[t give us. I guess this doctor will want to see Lara[s heart with her own eyes.
I know is to soon, probably things keeps the same since last month, I only hope not to get whorse!

good night!

[Willy]

We will see. If it is the same we will also change some other thing like Q10 and carnitine, corrij suggested a couple of weeks ago

So we do not run out of options.

Did you try the smoothie, sorbet ice, or the omega3 enriched egg yolk?

[Willy]

Here is good article from dr mercola

http://www.huffingtonpost.com/dr-mercol ... 22466.html

The essence is that SOY IS UNEATABLE', YOU CAN NOT EAT SOY

You can ONLY eat soy if you ferment it

And then it is like a medicine, only for peaple who have something that they want to treat with soy like the menopause of women over 50

did you see and understand now why we can NOT eat soy?

Do we have this soy subject closed for both your children?

[Aleta]

Yes yes yes. Arriving to cardiologist!

Thank you!!!!

[Aleta]

Hi Willy!

Long day, every day I see a doctor my energy levels reduce to minimun, like Lara´s!

Cooking: still dind´t try to make smothie but I will, I was experimenting making cookies and paste of wholemeal flour, for pizza and pies. I´ll find out what others flour I have unrefained to make pasata and stuff.
She is having two 170 ml bottles at day, but she starting to awake in the nights like a small baby, with hungry and the only way to sleep again is giving her a bottle she is eating a little more of solid but I believe is not enough for her, is gonna be a slow process........

Cardiologist: We loved her, at least me, didn´t talk to much with Sebastian cause he have to get to work right away. But she explain to us a lot of stuff. I´ll try to put my ideas toghether:

Lara is better since diagnosis, is what is spectable. the dilatation has stopped but the heart is growing along with her body, which at least is very good.
She thinks that the insuficience of diastolic function is not severe, is moderate. The mitral valve has a severe defficiency but not THAT MUCH defficiency, but she can´t compare really because is not informed in the firsts echos (only saids severe, but not numbers).

She loves to see BNP test, is those doctors that rather to see it. She thinks that the last one is upper because Lara is low of carvedilol dosis, if we prefer to follow treatment with her, she is gonna raise it up. Our current cardiologist gives low dosis to have resourses in case of whorsening.

Talk about the Willy´s protocol and she has no problem to go with it.

The left ventricule non compaction is not THAT big, she saw trabeculations but not that big to consider like Lara has the condition of LVNC, a few little trabeculations here and there but the same that she might see in a healthy heart. The main cardiopathy is DCM. That is why she can´t rule out a virus.

She wants to rule out ALKAPA (the coronary anomaly that was suspected in first place when firs diagnosed Lara), she thinks and see that the coronaries are where they has to be, but she wants to a specialist in coronaries make an echo just to see that, because there is a chance of %1 that exists and is another treatment and corrective surgury. She is almost %100 sure that the coronaries are right, is just in case.

She can´t see what is gonna happen in the future but here and now, sees Lara great, and far from transplant. is to soon to tell if she is gonna stay the same or get improve %100.

About today´s echo she said first that the shortening fraction is beetwing %25-%27, she recorded the echo and will make the measures later because Lara was very upset, but is very alike the last one in march. But she has serious doubts about the acho made in december which shows a decrease in dilatation and %29 of SF, because with that numbers, Lara would be almost without medication, taking that echo out, everything has logic. A little ondulating in SF but not that big.

The biggest concern would be the mitral valve defficiency, because is a respectable number in SF. She thinks that Lara can have a good cuality of life at least until puberty, then talk about transplant but who knows, meybe is earlier, maybe never.

So, we have a lot to think about, a lot of reaserch, because the focus on the CM is very diferent from both cardiologist. I don´t know who is right, meybe both and one of them does not explained all of this.

First, have this coronary echo done and have today´s echo report.

I don´t think the protocol is not working if we take the december echo out, it´s true that those number are a little weird.

Ok, that is all I remember now, if there is something else I´ll write you again.

Cheers!

Aleta.