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.
Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » ma jan 12, 2015 5:01 pm

Hi Aleta,

Zinc, vitamin C, vitamin D, old-fashioned chicken soup. :D Do you take supplements Aleta?

What is the amount Lara is taking?

About the chicken broth,

Once you taste this easy, homemade chicken broth, it will be hard to go back to the store cans and cartons. Not only does it taste so much better, but this homemade broth also has amazing health benefits. It's a money saver, too.

Listen to Grandma--she knew. Chicken broth (or stock) was made by simmering the carcass of a cooked chicken with a few veggies and herbs. That means just the chicken bones--not the meat. That means it costs almost nothing to make it, because you can use the bones that are leftover after a chicken dinner. That's what my frugal grandma and mother did, and that's the way I've always done it.

Many have claimed chicken broth could "cure what ails you," (it turns out, this old wive's tale is true). Why is bone broth such a super food? As the bones cook in water, a number of good tasting, health boosting vitamins and minerals are released into the broth. The natural gelatin, collagen, glucosamine, calcium, magnesium, and phosphorus have numerous healing powers; and, they are in a form that is easily absorbed by the body. Here are some of the health benefits of eating bone broth:
It can heal the stomach and aid digestion.
It can help fight the infection that causes colds and flu. (Eating chicken soup when you're sick really is good medicine!)
It can reduce joint pain.
It can help repair bones and make them stronger.
It is good for skin, nails, hair, and teeth.
Many nutritionists advise making chicken bone broth a regular part of your dietary routine. Use it in recipes, or drink a hot, soothing mugful as is. Your body will thank you.

Old-Fashioned Chicken Stock
Servings: makes 12 cups
Ingredients
Tourmaline Farms Roasted chicken carcass (approx. 2 lbs. of bones); include any leftover skin or pan drippings
1 or 2 medium onions, unpeeled & quartered
1 head of garlic, unpeeled, cut in half crosswise
2 celery ribs, cut in 1 to 2 inch pieces
2 carrots, cut in 1 to 2 inch pieces
5 sprigs of fresh thyme
5 sprigs of fresh parsley
1 bay leaf
1-1/2 teaspoons peppercorns
1 tablespoon cider vinegar
Mineral Salt (to taste)
3 quarts water (enough to immerse above ingredients)


Add all of the ingredients to a 6 quart (or larger) slow cooker. Cook on low for 10-12 hours. While still hot, pour through a wire mesh strainer to remove the solids.

For a fat-free broth, use one of these methods for removing the fat:
METHOD 1: Pour broth into a large bowl or container, cover, and refrigerate overnight or until completely chilled. Scrape the hardened fat from the top and discard.
METHOD 2: While broth is still warm, pour it into a grease separator (available on Amazon and at cooking stores), that allows you to pour the fat-free broth from the bottom.

FREEZE IT. Broth can be refrigerated for up to 4 days. For extended storage, it should be frozen. It's convenient to freeze it in 1 or 2 cup portions for easy use in recipes.

USES: This broth can be used in any soups, gravies, or any recipes calling for chicken broth. It also can be drunk as is for a healthy supplement to your diet.

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

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » ma jan 12, 2015 5:11 pm

Hi Aleta,

If i`m right she`s taking 2 x 15 mg magnesium and the ribose about 1 gr?

What kind of magnesium do you give her?

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

Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » ma jan 12, 2015 5:20 pm

Lara is having 1,35 gr of D-Ribose

Magnesiun (jigsaw) 25 mg twice a day. We have to take down the doses because sha had a little diarree, but she is the same a few months ago...

I´m takin polper B12 forte, ensure, and spirulina, but this cold I catched was first on Sebastian. This is a weird summer, usually we have all high tempertures, this one goes up and down! I´m taking supplements because I´ve lost 10kg and I believe is for the stress. All my blood tests are alright. But don´t worry, it hapened all my life, my family is very thin!

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » ma jan 12, 2015 5:31 pm

Hi Aleta,

The amount for magnesium is oke.
The ribose 1.75 gr. My calculation based on a adult that takes 15 gram a day.

I still want to know what kind of magnesium, Jigsaw is the brand.
Is it magnesium citrate or another kind?

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

Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » ma jan 12, 2015 5:43 pm

mmm not sure, this is the brand Willy sugested, to cause no diarree

this are suppement facts:

Vitamin C (as Ascobyl Palmitate)
Vitamin B6 (as Pyridoxal 5-Phosphate Monohydrate)
Folic Acid (as Quatrefolic 5-Methyl TatraHydrofolic Acid Glucosamine Salt)
Vitamn B12 (as Methylcobalamin)
Mafnesium (as Dimagnesium Malate)
Malic Acid ( from Magnesium malate

Oter ingredients: Mycrocrytaline Cellulose, Modified Cellulose, Croscarmellose Sodium, Silicon Dioxide, and micro wax.

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » ma jan 12, 2015 7:53 pm

Lets change the dosis at 10 kg weight

What do you think Corrij?

We have still an unresolved vitamin D issue

How much do you give lara now?
Met vriendelijke groeten,

Willy Witsel

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

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » ma jan 12, 2015 9:15 pm

Hi Willy,

For the magnesium that means 57 mg a day
For the ribose 2100 mg
Carnitine 250 mg
ubiquinol 30 mg

Do you agree?

Wich other supplements does she takes?

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

Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » ma jan 12, 2015 9:28 pm

What is ubiquinol? Qo10?

Qo10 she is having 150mg at day

Carnitine 500 mg at day

Those two were prescribed by children metabolism doc.

I still didn´t start de Vidamin D3, we are wainting for a friend kinesiologist to do the research with his colegues doctors.

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » ma jan 12, 2015 10:20 pm

Hi Aleta,

there are two forms of CoQ10, and the better, far more effective alternative is its reduced form, called ubiquinol.
If you're under 25 years old, your body is capable of converting CoQ10 to the reduced form fairly well and the additional expense of purchasing the reduced form is unnecessary.

I really don`t understand the amount she`s getting. This is much more than the children on the dutch forum.

Willy can you explane this?

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

Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » ma jan 12, 2015 10:26 pm

Yes, is a lot. But her doctor prescribed that, and when she firs improve I asked if could be the siupplements, and she tol that she didn´t knew, but she wouldn´t take it out for sure.

Willy sugested less than that dose, in soft gels, but as this is a capsule full with powder, made in a pharmacy, he believes (this is wath I remember) that Lara is not gonna absorve it all.

I know carnitine is a lot too.

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » ma jan 12, 2015 10:29 pm

is this acetyl-l-carnitine?
Those who do not have enough time for good health,
will not have good health for enough time.

Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » ma jan 12, 2015 10:40 pm

This is the one and only available here and what Lara is having:

https://translate.google.com/translate? ... edit-text=

if this is not good we can send to a pharmacy to prepare.

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » di jan 13, 2015 11:49 am

Corrij (therapeut) schreef:Hi Willy,

For the magnesium that means 57 mg a day
For the ribose 2100 mg
Carnitine 250 mg
ubiquinol 30 mg

Do you agree?

Wich other supplements does she takes?

greetings,
Corrij
What is Lara's weigh in this calculation and can you add also the calculation from adult perspective so we see exactly what is going on

Lara is getting Q10 in powder form. Not very good bioavailable. Therefore the doctor is prescribes 150mg

Maybe it is time to get her on normal oil based Q10
Met vriendelijke groeten,

Willy Witsel

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

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » di jan 13, 2015 11:51 am

Aleta schreef:I still didn´t start de Vidamin D3, we are wainting for a friend kinesiologist to do the research with his colegues doctors.
that takes to long. take my calculated references, upper limit 60 and start with 2 x 1000 IU per week, it is summer in Argentina

In march blood test again
Met vriendelijke groeten,

Willy Witsel

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

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

Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » di jan 13, 2015 4:11 pm

ok, I´ll give her 1000 UI today, and 1000 on sunday. it is OK?

About the Qo10, we send to prepare in the best pharmacy that has lab in BA, we did a lot of resaearch about it, if is worth to know.

By other hand, do you have the reference ranges of DDVI/DSVI? that is the ventricule size, but I think is an spanish abreviation. I can´t find anything on internet... The thing is we never got to know how enlarged her heart is, there are some things that doctor don´t explain to us. Most of the illnes info we got it from you or the facebook group, or internet sites :(
her values are DDVI 30mm DSVI 20mm, that is between 4 or 6 mm less in both sizes since the first echo in june. But doctor says she is the same, so I guess is no dramatic change, but if there is a minimun improve we want to know!

have a nice day! (here it isn´t dday yet).

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