Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

Hi Willy, I don´t know by the hour in wich part of the planet are you, but I hope you are having a good time.
Weeeeel, we´ve seen the children matabolisim doctor today, the mitocondrial tests are no conclusive. The ones that tested Lara´s blood from birth are normal, the beta oxidation and electrofocusing ferritin too, but in others there are some acids a little high, in the other is the suberic acid little high and detect trace hexanoyl glycine. So, for her it´s a "gray" result. The only prove she can get that there is a mitocondrial isue, would be if the Qo10 and L-Carnitine improves Lara´s heart.

The good part is we told her about magnesium and ribosa and she was ok, and that she thinks is good to indicate keep going with Qo10 and carnitine, so that is one isue less with doctors.

The bad part is that she told us, that if Lara doesen´t have a mitocondrial isue, supplements won´t do anything, maybe can help a liiiiittle to the mitocondria, but maybe not. I´ve ask her about matabolic cardiology, about stephen sinatra (she doesen´t knew him), and she told that there´s nothing of sience in that (!!!!!), that if someone were discovered something usefull to cure this, every doctor in the world would knew about it. The only stuff they take seriously are the ones published, and we can (and any other family) follow those theorys maybe just to feel better and optimistic.

To hear that from a person in a white suit freaks me out, I´ve get out of there feeling so sad and desapointment! I´m very trashy right now.

Still, I saw several kids in the group of facebook that we are, and saskia too, that are much better with supplements, some of them even completly cured, so if that is not sience I don´t know what is.

But every time a doctor tells us those things I end up feeling like crap and hopeless, they enter in my mind and stay living.

Sorry Willy, I´ve came back home very angry. But I feel the protocol is the only hope for Lara, because the doctors only try with things they know, so closed to ideas. But I ask myself if getting angry with them is not a way to not see something...

Anyway, if Lara doesen[t have a mito isue is a problem less for her, and the protocol hopefully works and we[ll be happy ever after, If she has it, in doctors theory, will work too. I should go to sleep with that idea.

That clinic is full of very cold doctors, the minimun we deserve for dealig with them, is they get Lara through this!

One funny part is that she saw the vitamine D result and ask why a doctor asked for that, and the assistant told her about a few studies related with lungs infections, none of them took it to seriusly, but the asistent knew it and she didn[t. Oh my.

By the way, Lara is more beautiful every day, I hope we take you to meet her some day to holland.

[Willy]

Aleta we are still in Rome fly back to Holland today

You have extremly professional cardiologists around Lara. But they are trained to use medication for this condition.

It is already unbelievable that they agree on q10 and carnitine. In the netherlands they would never do that. They know enough about Lara s problems but not enough about the use of supplements. For them it is like advising Lara to eat grass to cure cardiomyopathy.

So.............

You have two professions that work on Lara s health, cardiologists and orthomoleculair science

We have to wait and see what happens in The last week of November with the blood tests. That is the best you can do. Lara is not critically ill and you might be able to cure her.

DO NOG BE ANGRY ON YOUR DOCTORS SURROUNDING LARA

They are doing there best. Be patient, we have to go a long way, probably two years to see who was right and who made a mistake.

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How is the magensium and the ribose qoing? What doses are you using? Any signs of diarree?

[Willy]

Try to avoid from now that you run out of supplements. So buy them in time

[Aleta]

I know I shouldn´t get angry with doctors, and I know why I do, it´s because I don´t hear from them what I need to, that she is gonna ok. It is childish, they just don´t know.

But, the pediatrician from the clinic told us that he don´t know if she will be ok when she start to walk, and that is around the corner, I don´t see the point in make me scared with those things, I don´t know why they say it. Now I´m really scared that she might have a heart attact just from start to walk.... those things keeps in my mind.

I feel like we are numbers for some of them, and say anything crazy without thinking in the impact that they have on parents. I don´t even know if is a posibility to have a heart attack by walking.

no diarree sings, we are giving her 15mg one time a day of magnesium, and 1gr of ribose divided in two.
Shold we raise that up?

Don´t worry, we buy enough for a good time

Have a good fly home!

[Willy]

We are in the Netherlands again, now in the car driving home

Aleta Lara will NOT get a heart attack if she starts to walk, that is an other kind of disease

The only thing what can happen is that she will walk and then be so tired that she will stop doing that.

Children with this condition will be delayed in their progress to learn new things when they do not have the energy, but WILL NOT get a heart attack

Look at your doughter and see how she is enjoying life how she expects new things to happen every day. Learn from your doughter how to be happy with all things that happens during the day. Try to give up thinking of what might happen in the future.

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Keep the doses on this level. If diaree is gone for two weeks we will try 2 x 15% of one tablet.

Put the 4th week of november in your diary for bloodtests pro-BNP and vitamin D

[Aleta]

I´ve never been good at being happy at short time, always had plans and plans and plans. But I´ll learn while Lara learn to walk, we´ll learn stuff togheter

Thank you

Understood the magnesium dose plan, but ribose in this days I´ll raise up?

we´ll do the pro BNP and vitamine D.

A friend of a friend of my mom (!) buy for us in miami the new foods ribose and vitamin D3! I hope they arrive well. So we´ll have the ones we know it works. at the time we are giving her health genesis ribose, we have 3 bottles and the new foods comig, so we have a lot, don´t worry.

have a nice dinner and rest post vacation!

[Willy]

For an adult with 70 kg the ribose doses is 12 gram

12 / 70 = 0,17 gram

For Lara with 8 kg

0,17 x 8 = 1,37 gram

Divided in 3 times per day

1,37 / 3 = 0,45 gram

So the correct dosis is 3 x 0,45 gram per day

But start with 1 x 0,45 gram per day and slowly bring that up to 3 x

This was the calculated doses, so you can raise the dosis to 1,35 grams per day, but divide this doses into 3 portions

Health Genesis is also a good supplement manufacturer

[Aleta]

Perfect, thank you!

[Aleta]

Hi Willy, I was a little down today, and then I saw your post on facebook. You know how to raise a spirit up, yo have telephatic powers too?
We still don't know if we are giving Lara the right amount of ribose, we didn't found a spoon that measures grams, we buy a scale but measures biger amount of grams, and in the farmacy could't help.

So, we found in a cup that measures sugar, liquid, grains, etc, that 150 ml is like 200gr of farina. So, we put the ribose in a seringe to the 06ml size 3 time a day. That would be 1,35 more or less, we are right?

It's been 12 days without diarree, should we wait a few day more to raise magnesium up?

Next week cardiologis appointment, very nervous!

Have a nice day!

[Willy]

Telepathic powers, yes that is true, I know things.....

The d-ribose is extremely save. Saskia gave Emma one year long 2 x 5 gram by mistake

That is now corrected to 2 x 1 gram. Emma's weight is 13 kilo

If you give Lara more than 1,3 then this only costs more money

The only question you have to ask the pharmacy is to measure 1 gram dribose. Take that amount of powder home and see which spoon fits best.

Accuracy is not realy needed here

[Aleta]

ok, tomorrow I have to pick up spironolactona from the pharmacy with lab, meybe they can measure a gram for me. Our worry is if we are giving her less than she needs.

I know you know things, Sebastian and Benjamin has some intuitive mind too, don´t know how they do it (now I think they see what they want to see), I´m just more like to "see to believe".

Don´t worry, next week we have our cardio appointment, I´m just nervious about that. Scared is the right word.

[Willy]

Look at Lara and try to see how she is growing up. Not like a sick child but like a child that expects new things every day from her life. Do the same, live by the day!

You are doing every thing you can to help Lara. You can notthing more.

You have to let go.

[Aleta]

hard to do for me, but I´m trying yet!

I forgot to tell you something about our appointment with metabolic doctor last week. I´ve asked why in supradyn prospect says 6 drops a day, and childs with deficiency 12, and she told us to give Lara 20. She answer that are like "super vitamins", but if Lara didn´t like it, try to give her 12. Lara is bigger and used to have meds now, so she is having 20 drops. We put them in a seringe and are like 1 ml.

this is the prospect:
https://translate.google.com.ar/transla ... edit-text=

We´ve read about a parents in US that have their children on something they call "mito-tonic", has some of the protocol stuff and some of this vitamines too.

It is a problem to give Lara the supradyn besides the protocol??? We told to the doc Lara is having magnesium and robose and she was ok, but give us a prescription to take Lara´s blood in a few month and see if she isn´t having to much magnesium.

HOMEOPATIC
As it is not a big help I also didn´t talk to you about it. I have a phonecall with this doctor, he told me that he treats patiens with orthomolecular medicine, but no expierience with children, but he thinks that this medication could help to push up the treatment you are given to Lara.
He said the globules are made of mitral valve of cow or pork, solved at sixth power (I don´t know if that the way to write that), and if I solute all the jar and I give to Lara the first day, it will do no bad.
The worse thing that could happen is not to work.
That sopouse to send Laras´s mitral valve info of how to work good again.

That phonecall was right before we go to see the metabolic doc, we told her and sort of laugh about it, and told that natural things can kill, marihuana, cocaine (yes, she said cocaine is natural), all natural things (????) so, didn´t importance at all.

As homeopatic never worked on me or Seba, we have no special rush in give it to Lara, but if you think it might help, we´ll do.

this is the doctor, in the link below, he didn´t want us to see him in the office or anything, just asked some stuff via mail and talk on the phone. In Argentina is weird that someone doesen´t try to charge you for help, but we are meeting people who just wanna help A friend of us recomended him, telling us to try everything at the same time, but we want to ask you and the doctors first.

https://translate.google.com.ar/transla ... edit-text=

You might be sleeping, it´s Mate time here for me, so when you see this: good morning and have a nice day!

[Willy]

Supradyn is fine.

Homeopathy

I do not know what he wants to give to Lara. It is not homeopathic bevause it is measured in grams

[Aleta]

no homeopathy then! we are not ganna give her something that nobody knows what it is.
thank you!