BEHANDELING HART EN VAATZIEKEN

Good idea!

hi! today after 2 weeks with no diarre, we´ll start 2X15mg magnasium a day.

Lara is having more energy, she want to be stand up all day, maybe is her time to stand up, maybe the supplements help, I don´t know.

Good idea! Let 's try the 2 x 15 doses!

More energy is a good sign.

She is less agitated also, but i don't know why is that... I wanna see her heart next week. I only hope she is not getting whorse. The ped saw Lara very good. We'll see. Nervious about next week!

I can more or less guarantee you that her condition is NOT getting worse!!

That is impossible with these clinical signs of improvement

Aleta "listen" to your daughter!

That is a doubt we have. If the outside look is a sing of what is going on inside, because Lara never had big symptoms.
Later we'll send you a picture of Lara so you see how beatiful she is growing.

That would be nice!

Willy, tomorrow is the cardio appointment, I´m crazy scared!!! I´ll let you know how it went.
agh just want you to know.

Oke I understand

This was for all parents a difficult moment

If you believe in God, this is the moment for a prayer

I've just posted but i believe it didn't actually post. Lara's heart is growing along with her body, the mitral valve still doesen't work well, but her function now is 28%!!!! 2 months ago was 20%! Thank you!!!! Last time was only 15 days after start the protocol, we are so happy! Thank youuuuuuu

Also the gradient I was talking about a few post ago, decresed a 5%.
Tha doctor don´t let us to be to exited, she said that is a "little better, still below the normal range", but I think an improve of 8% in EF is a lot right?
Our understanding is that the normal range for kids is 30-40%, is that right? one of the doctors said to us that the normal is 25-45, but the doctor in chief, who is real Lara´s doc, said she still isn´t in the normal range.
for us is a lot of improve.
Still we have a long road to go, but we are happy with our small victory today
we are so grateful to you!

Excellent the first step in the good direction

20 --> 28 is an improvement of 40% that is a lot

In The Netherlands the normal EJF for children is > 30%

Ypu are right that she is only a couple of weeks on the complete protocol, but do not forget the Q10 and Carnitine. She is using these supplements already for a long time

Pro-BNP?

Hello Aleta,
That 's very very very very good!

On facebook you made a mistake with typing. You wrote that EJF first was 29% and now is 28%. So I didn't understand why you are so happy.
But now I read on the forum that it was 20% first. That is good progress indeed!

I hope you will have better hope for the future and can feel less sad and more hopefull.
give Lara and Benjamin a big hug en enjoy the weekend.

Willy, I consider we´ve started the protocol since she started with Qo10, that was 15 days before the last echo two months ago, now, two month later I feel the supplements made a pretty good work!

I´m really surprised, I thought that this would happen in a few more months, I´m happy. We still have a long way to go, I hope this is the first step as you said (I´m still scared you see)

In the doc office were two cardiologist, one writing everything that the other was measuring in the echo, she said "it´s 28... no, let me measure again, no, it´s 29", I don´t know why in the report says 28%... but we decide to keep the report version.

The the chief came in and talked to us a while, didn´t sound to entusiastic but I guess she was having a bad day, there was a patient in inetensive care, she very tired

Sebastian asked if she was especting that Lara improves so fast, and she told that they can never know, that she has a kid in intensive care with the same that Lara, and Lara is having a normal life -I can´t stop thinking about that kid -

I´ve asked what she thinks about what the metabolism doc said, that if Lara improves means that some mitocondrial stuff might happen, and the answer was that when some mito isues shows in a blood test, the values are not a "little high", are a lot high. But she said we keep going on Qo10 anyway.

They test pro-BNP only in critical patients, I´ll ask for prescription las week of november to our pediatrician as you said, or you want it earlier?

I might not sound to happy, but we did a happy dance with Benjamin yesterday

November is fine for pro-BNP testing!

The protocol is designed to

1. improve mitochondrial bio-energy production
2. Allow heart cells to live longer
3. Remove free radicals as soon as possible

I know how this works

What happens next is that the heart starts repairing itself using this extra energy for healing

I do not know how that works

We know now that we can intervene on the mitochondrial level, now we have to see what Lara's heart will do with this extra energy.

Signs that she is able to do that is when here heart gets smaller and the mitral valve closes better

But Aleta do not start worrieng

And "listen" to your doughter, she will "tell" you if things work out wel in advance