Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

November is fine for pro-BNP and EJF

Lara has a dilated Cardimyopathy, that is causing the mitrla valve problems. When her haert will reduce in size the valve will function better. But.......

That wil take a year

[Aleta]

Correct magnesium time released so it will give less diaree

I use the same product because other forms give me diaree problems

Go for one third of a tablet per day. Devide that little bit roughly into two parts and give that in the morning and in the evening

DO YOU UNDERSTAND THIS?

Basically the dosis is 2 x 15% of one jigsaw tablet per day

Later we will increase the dosis to 2 x 25% of one tablet per day

Post a message if you received the jigsaw



Sebastian is on the way to pick up the jig saw. we´ll start tonight. After the meal or before? with the bottle or far? in the betwin the feeding?

[Aleta]

and this morning we did the blood test, it will be ready next tuesday........ aaaaa

[Willy]

Oke excellent

Go for one third of the 100 mg jigsaw tablet and deivde that into two portions

Give her one portion in the morning and one in the eavening

In about a month we will try to increase the dosis to half a tablet per day into two portions

[Aleta]

great! there´s no problem about how close to the meal? I give her the first dosis of carnitine first thing in the morning with the spironolactne and fursemida. can be the first dosis at that moment? after that I give her the first milk. in the night could be before the last milk of the day with the other meds?

[Willy]

It is not critical, during or after meal is ok!

[Aleta]

ok thank you thank you thank you!

[Aleta]

Willy! we just figured out about the magnesium tablets, it saids 500 mg taking 4 tablets a day, so each one of them has a little bit of 100 mg. So tonight we gave Lara the first magnesiun lets hope for no diarrea! I¨ve cut in 3, and the in a half. one hal in the morning and 1 half at nigh. so september 3 Lara started the magnesium. Still no shipping from health genesis; I´ve sent several emails! When do we have to start with Ribosa?
Also got some hypericum for mom, are drops, I will keep searching for the tablets.
Thanks for that to. it is hard somedays.
Let me know if we are doing ok with the dosis of magnesium please.
THANK YOUUUUU

[Willy]

YES, this was my response on your mail

These are the right tablets

What you did not read is the notice

Serving Size 4 tablets

So 4 tablets contain 500 mg magnesium, so 1 tablet contains 125 mg

You have to give Lara 30 mg per day, one third of the tablet. That is little bit more then 30 mg but that is not a problem

[Aleta]

willy a question, if the miocardiopathy were genetic, or a virus, or methabolic, or a malformation from before birth, changes the protocol prognosis? can´s stop thinking today

[Willy]

Only the last one I can not cure, malformation during birth

But........

We checked the mitral valve issue, according to the cardiologist it is cosequence from the dialted CMP and NOT the cause of CMP

For me that was an important question when we started

Hypericum?

[Aleta]

yes the mitral valve is a consequence from the dilated CMP, and also we got that little 5% less of mitral filure..... why exacly is that so important?
But I was thinking in the diagnosis time, and the first time we saw our cardiologist she said that she THINKS it´s amalformation during birth, I don´t know why she thinks that, maybe for the noncampacted cardiomiopathy part?
I belive that can be a virus from the hospital because she was premature and was in neonatology for 18 days, I´ve ask the cardiologist and thinks that is possible too...
the metabolism doctor suspect with nothing concrete, only some elevated acids about mitocondrial, we are running tests about it, will be ready on october 8
and the last time we saw the cardiologist told us that some kids with grown has an acelerated process to dilated more, others just stay the same and others regenerates new tissue, so....... right now I don´t know what cardiologist thinks
what do yo think? you have more expierence than us, we are in the beggining of understand all of this...

Do you want me to send you the first report? or the last one?

Hypericum, I got drops, I´m drinking 30 drops 3 times a day, but I´ll keep searching for tablets here, not ask outside because is sooooooo frinking complicated!
I started therapy too

But the only thing I need to be happy is to cure my baby

[Willy]

With a dilated CMP the mitral valve always does not work correctly

We have to wait and see in november what the value is for pro-BNP and if possible EJF

Now we have to focus on the protocol

Vitamin D blood value is the next important blood test to calculate the vitamin D doses?

HYPERICUM??

[Aleta]

I´ve call herbalist, the drops of hypericum are like 300/400mg, but they sell tablets of 300mg too, so I´ll get those.

The vitamine D in blood results will be at september 9, if they are ready earlier I´ll let you know right away.

[Aleta]

And we have cardiologist appointment on october 23, lets hope for a little tiny improve at list. And the cardiologist already told us that they don´t do pro-BNP tests unless very acute cases, so we´ll ask our pediatrician in november for a prescription to do it.