Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

Lets wait for Corrij to catchup

Inwant to know what she is thinking on this issue

[Aleta]

ok, what I can imagine is that is a dry prepare, maybe having in liquid for a while could ruined, but is a guess.

Sebastian recal that since a few month ago we are to strict about the supplements schedule. if Lara is havin her nap at 16 pm we give the ribose later, and if the magnesium is to close of the meal at 20 pm we give it at midnight with the rest of meds.

I tell you what we are remembering.

Regards!

Aleta.

[Corrij (therapeut)]

Hi Aleta,

For some reason i don`t get a message when you post something.

Wath`s the reason you giving her milk?

Three-fourths of the world's population has lactose intolerance or cannot comfortably digest lactose, a sugar found in milk. Calcium can also inhibit the absorption of iron, which means drinking too much milk can lead to anemia, Maguire told Live Science.

The calorie-laden beverage could also promote obesity. A December 2014 study in the Archives of Disease in Childhood found that preschoolers who drink three or more servings of milk a day are likelier to be taller, but also more obese and overweight. Whole, or full-fat, milk has high levels of saturated fat, which has been tied to health problems. And some studies suggest low-fat and skim milk may not be an answer, because people feel less full after drinking it.

Another problem is that filling up on milk can mean not eating other healthy foods on the plate, and this can be especially true of kids who are picky eaters.

"If you actually feed a child three servings of cow's milk, how are they going to have room for other healthful foods like those vegetables, legumes and lean proteins?"

The health benefits of drinking flavored milks are even more dubious.

"An 8-ounce glass of low-fat chocolate milk has the same number of calories from sugar as an 8-ounce glass of Coke or Pepsi,". Added sugar has been tied to a host of health problems, from obesity to diabetes to heart disease.

In the end, milk may not be a superfood, but it does provide valuable nutrients that can be hard to get into kids in other ways.


Every nutrient you consume must go through the gastrointestinal tract to be digested and absorbed. Many vitamins and minerals you must consume daily have similar cellular transports and thus compete for absorption.Understanding which minerals in milk compete with magnesium is important because it will help ensure you get maximum absorption of your magnesium supplement.
Although magnesium is found within milk, it may not be in your best interest to consume a magnesium supplement with a glass of milk. Magnesium and calcium have a complicated relationship. Both minerals have overlapping transport systems within the body, so when consumed together they compete for absorption. Magnesium also interacts with calcium at the muscle level and may interfere with muscle contractions as well.

Consume your magnesium supplement at a time when you are not going to consume milk or a calcium supplement. Magnesium also interferes with phosphorus and potassium, so consume your supplement when you are not consuming large dosages of these minerals as well. Food sources of phosphorus include meat, poultry, nuts, milk and legumes. Food sources of potassium include avocados, bananas, oranges, potatoes, dairy products and eggs.

I suggest,

In the morning at first her milk, because she can be hungry.

After 2 hours the carnitine, this on a empty stomach! When you take , L-carnitine, along with a meal containing protein, they have to compete for absorption with the amino acids in the protein. Avoid this by taking them on an empty stomach instead.


Coenzyme Q10 is a very large molecule with chemical properties that affect the rate in which the body can absorb the supplement. It is hydrophobic and repels water, although it can be mixed in water or a favorite juice drink and consumed in suspension.

However, very little is absorbed by the body if it is just taken directly with water in powder form (or as a powder in capsules).

The assimilation and absorption of Coenzyme Q10 is improved if taken with a fatty substance such as oil, peanut butter or olive oil. So give her the Q10 with a little peanutbutter as a treat.

The magnsdium together with her meds.

Your child is walking, climbing, running, and "talking" nonstop now. Such developmental milestones mean his nutritional needs have changed, too.

Avoid making only your child's favorites. Serving the likes of mac and cheese, hot dogs, plain pasta, and chicken nuggets to her when she's young ensures she'll expect only those foods when she's older.

greetings,
Corrij

[Corrij (therapeut)]

Hi Willy,

Just thinking would it be an idea ti mix two forms of carnitine for Lara, acetyl and propionyl ?
Maybe she gets more benefit of the carinitine suplementing.

Heart failure is described as the heart's inability to pump enough blood for all of the body's needs. In coronary artery disease, accumulation of atherosclerotic plaque in the coronary arteries may prevent heart regions from getting adequate circulation, ultimately resulting in cardiac damage and impaired pumping ability. Myocardial infarction (MI) may also damage the heart muscle, which could potentially lead to heart failure. Because physical exercise increases the demand on the weakened heart, measures of exercise tolerance are frequently used to monitor the severity of heart failure. Echocardiography is also used to determine the left ventricular ejection fraction (LVEF), an objective measure of the heart's pumping ability. A LVEF of less than 40% is indicative of systolic heart failure .

Addition of L-carnitine to standard medical therapy for heart failure has been evaluated in several clinical trials. A randomized, placebo-controlled study in 70 heart failure patients found that three-year survival was significantly higher in the group receiving oral L-carnitine (2 grams/day) compared to the group receiving placebo . In a randomized, single-blind, placebo-controlled trial in 30 heart failure patients, oral administration of 1.5 grams/day of propionyl-L-carnitine for one month resulted in significantly improved measures of exercise tolerance and a slight but significant decrease in left ventricular size compared to placebo . A larger randomized, double-blind, placebo-controlled trial compared the addition of propionyl-L-carnitine (1.5 grams/day for six months) to the treatment regimen of 271 heart failure patients to a placebo group consisting of 266 patients . Overall, exercise tolerance was not different between the two groups. However, in patients with higher LVEF values (greater than 30%), exercise tolerance was significantly improved in the propionyl-L-carnitine versus placebo group, suggesting that propionyl-L-carnitine may help improve exercise tolerance in higher functioning heart failure patients. A recent study in 29 patients with mild diastolic heart failure (LVEF > 45%) found that 1.5 grams/day of oral L-carnitine for three months improved some measures of diastolic function compared to baseline .

What would you think?

greetings,
Corrij

[Aleta]

Hi Corrij and Willy!

Corrij, thanks for the long and educational post. I believe we were killing the Q10 properties by letting it in water for 15 to 40 minutes. Also we give the magnesium 15 minutes before the milk in the morning, so that take is not working too!

We are in Argentina, we have a lot of cows and people are used to eat a LOT of meat and drink a LOT of milk, and is a strong believe in that the childrens must have milk . Is not my (Aleta) case, I´m vegetarian and my parents too, when I was a child they had a macrobiotic diet, so I didn´t had cow milk besides breastfeeding, I had soy milk. I was healthy but really skinny, because of diet and genetics, all my family is thin. I have no problem about not giving Lara meat, everybody advice me to give it to her, but she can´t have fat, and the meat, has it.

With my childrens I went to the sure way and besides of breast feeding, I give them cow´s milk. Lara is no longer breastfeed, so she only have cow´s milk.

When we got Lara to the nutricionist, she told us that lara needs a high calorie diet. As Lara is a not super great eater, I am relaxed thinking that the nutrient she does not eat on a plate will have it in the milk. She drinks Nutrilon 3, this is the one: http://www.nutriacademia.com.ar/nutrilon-profutura-3 (push the button that says INFORMACION NUTRICIONAL), it came fortified with lots of minerals and vitamins.

Even so, I know is time and the pediatrician thinks the same, that Lara drinks less milk and have more food, so we are working on it.

About the suplements: the midnight meds are before the last bottle of milk before go to bed, so giving the magnesium thare (wich sometimes we do if she was eating a snack at 20 PM) will be no good idea...

New plan will be (correct me if is a bad plan):
In the morning milk, after to hours Carnitine and magnesium, all far before and after milk or meal. After her lunch, a while later she likes another bottle of milk befor her nap, there I could give her the Q10. And around 19, 20 pm, far from milk and snacks, carnitine and magnesium again.
Sounds like a good plan?

Lara is unpredictible with her apetite, so it´s hard to follow an schedule, but I´ll dance with her and will give her carnitine and magnesium far from food. And Q10 with something with fat like milk or a pudin. Maybe that could be at midnight right before the last bottle?

HAving this bad habits about the times we were giving the supplements may have the protocol not working good?

[Corrij (therapeut)]

hi Aleta,

Does she have problems getting too sleep? Because the Q10 can keep her awake.
Don`t be so hard for yourself, your doing great, it could have some impact in how and when your taking supplements, we want too take the maximum of all these supplements thus...

I really think she gets too much milk.
Thanks to our creative ingenuity and perhaps related to our ancient survival needs, we adopted the dubious habit of drinking another species’ milk. Nobody can dispute that cow’s milk is an excellent food source for calves. Weighing around 100 pounds at birth, a calf typically gains approximately eight times its weight by the time it is weaned. But unlike humans, once calves are weaned, they never drink milk again. And the same applies to every mammalian species on this planet.

Also, each mammalian species has its own “designer” milk, and cow’s milk is no exception. For example, cow’s milk contains on average three times the amount of protein than human milk which creates metabolic disturbances in humans that have detrimental bone health consequences.

It’s important to bear in mind that mother’s milk is excellent nourishment for human babies, but its composition is very different from cow’s milk.

Until the end of the 19th century in Europe and the beginning of the 20th century in the US, milk was consumed unpasteurized or raw. Later on, homogenization became the industry’s standard. These processes further alter milk’s chemistry and actually increase its detrimental acidifying effects.

Raw milk advocates claim that if cow’s milk is left “as is” it is a healthy and wholesome drink. It is true that raw milk is less acidifying than processed milk and that pasteurization and homogenization may cause a long list of digestive and other health problems, but I still don’t recommend drinking any kind of cow’s milk.

Nowadays, milking cows are given antibiotics and most are also injected with a genetically engineered form of bovine growth hormone (rBGH). A man-made or synthetic hormone used to artificially increase milk production, rBGH also increases blood levels of the insulin-growth factor 1 (IGF-1) in those who drink it. And higher levels of IGF-1 are linked to several cancers.

This should not be ignored, especially in view of recent information by Samuel Epstein, MD, Professor of Environmental Medicine at the University of Illinois School of Public Health, and Chairman of the Cancer Prevention Coalition. In an article titled “Monsanto’s Hormonal Milk Poses Serious Risks of Breast Cancer, Besides Other Cancers” (http://www.preventcancer.com/press/rele ... ly8_98.htm, June 21, 1998) Dr. Epstein concludes that:

But first, I’d like to clarify that unsweetened fermented or cultured dairy products such as yogurt, kefir, and sour cream are acid neutral. Yogurt in particular is chock-full of beneficial qualities. As is the case with milk, organic yogurt does not have rBGH, but even several of the most well-known yogurt brands have stopped using the bovine growth hormone (rBGH). You should call your favorite yogurt company to confirm. One more clarification: when I say unsweetened I mean without sugar or any artificial sweetener. However, you can add honey or stevia, a zero calorie plant-derived sweetener that is delicious and alkalizing as well.

My favorite milk substitute is unsweetened almond milk, not only because it is alkalizing (as almonds are), but also because it’s delicious and tastes very similar to milk. I even cook with it!

If almond milk is hard to get, you can also try rice or soy milk. I strongly suggest consuming only organic soy milk to insure it’s not made with genetically modified soy. There is also some controversy about unfermented soy products, so try to use it in moderation.

greetings,
Corrij

[Aleta]

I´ve forgot! Lara´s heart functin is not measuring in Ejection Fraction, is in Shortening Fraction, wich has to be %30-50 or so, and she is on %24. At diagnosis was on 20, after full protocol 28, 29, and now 24.

[Aleta]

Well, it´s a thing with the milk. I just have it with coffe.

Nutrilon is the one that Lara drinks, and is not transgenic, others trand have soy--------< monsanto. I loved soy all my life, but................. we got Monsanto since a few years ago
I give Lara soy but I´m trying to find really organic and trusted food, because Monsanto has 90% of our soy.

I know it´s crazy give children milk of other species, but I´m desperate for Lara to grown and feed, she is a hard cookie!

And now is the sodium isue! what I could solve giving her vegetables and fruits that sells tight to my next door, but she is hard!

I´ll keep trying!

[Corrij (therapeut)]

Hi Aleta,

Two methods of assessing pumping ability of the heart:
Ejection fraction. The left ventricle is a chamber which relaxes to fill with blood and then contracts to pump the blood out. Even in a healthy heart, the left ventricle does not pump all of the blood out with each beat. The ejection fraction is defined by the following formula:


The ejection fraction is a useful measure of left ventricular performance. The normal range is 63-77% for males and 55-75% for females (reference: Measurements in Cardiology). If the left ventricle wall is thinned, a decrease in the ejection fraction is seen.
Shortening fraction. The shortening fraction is a slightly different way of measuring left ventricle performance. Instead of measuring and ratio-ing blood volumes, the shortening fraction measures and ratios the change in the diameter of the left ventricle between the contracted and relaxed states:


The normal range is 0.18-0.42, or 18-42% (reference: Measurements in Cardiology). According to the Oeffinger/Keene article, " . . . above 30% is considered normal, with 26 to 30% representing a mild decrease in function. . . . A decrease in the shortening fraction usually precedes a detectable decrease in the ejection fraction."

About the z-score,
Measurements are an important part of clinical assessment in the practice of paediatric cardiology. At the most basic level this typically includes measurement of the child's weight, height and blood pressure at clinic visits. Echocardiographic assessment is integral to patient assessment in the majority of children and decisions with respect to surgery or catheter intervention are frequently based on echocardiographic findings. In adult practice, ultrasound measurements are often reported with respect to a single “normal range” but this approach is impossible in growing children because the normal range of measurements will be impacted by patient growth and / or patient age. Therefore, the interpretation of these measurements during childhood presents a unique challenge, in determining whether a given measurement is within the expected range. In addition, if a measurement deviates from normality it is necessary for the clinician to gauge the magnitude of such deviation.

An approach to the description of clinical and echocardiographic variables is to describe the measurement in terms of a Z-score. The Z-score describes how many standard deviations above or below a size or age-specific population mean a given measurement lies. This approach has major attractions in paediatric cardiology and is increasingly being adopted. As an example, the left ventricle will become larger in all children as they grow. However, if a patient with chronic aortic or mitral valve regurgitation is being followed through serial assessment then clearly it is an abnormal and inappropriate dilation of the left ventricle that must be excluded. The use of Z-scores facilitates the detection of pathological increases in left ventricular dimensions, over and above that expected due to normal growth, by showing an increased Z-score over time.

greetings,
Corrij

[Corrij (therapeut)]

Hi Aleta,

Do you know how much sugar is in Nutrilon? 6.5 gram - 100 gram.
4 grams of sugar = 1 teaspoon – an important fact to keep in mind when reading nutrition labels

[Aleta]

Yes, nutrilon which is formula, taste like vanilla. Is very sweet, but cardiologist folds us is OK for Lara. I'll try to get off formula and more solid food.

About the z score, what I don't know is what Lara is.

[Aleta]

HI Corrij and Wlly!

Two questions: after magnesium and carnitine, how long should I wait to give Lara food or milk?

Q10 in the morning with the first bottle would be good?

Have a nice sunday!

[Willy]

I talked with Corrij and we agree that we have to make a plan for Lara beyond supplements

We have to look at food also. And when supplements are given with food

We have to adress the following: less sugar, less salt, stop milk, more fruits and vegtables, stop processed food, other Q10, supplement timing with food.

We start with Magnesium

In some studies Vitamin D has been shown to increase magnesium absorption, but the results are not definitive. Given that Vitamin D is one of the nutrients most deficient in industrialized nations, however, it may be worthwhile to combine Vitamin D intake with magnesium as extra assurance, particularly during winter months when Vitamin D supplies tend to be low in the body.

In one study, addition of 300 to 1000 mg of calcium to the diet decreased magnesium absorption significantly in participants consuming an average of 370 of dietary magnesium daily

http://www.ancient-minerals.com/magnesi ... note_5_277

Conclusion

Magnesium together with vitamin D and NOT with milk

Are you still on the Yigsaw magnesium? http://www.jigsawhealth.com/supplements/magnesium/

Are you still giving Lara vitamin D?

[Aleta]

Hi!

It´s gonna be hard stop milk, gonna take some time. she is not a great solid food eater. But we´ll work on it right away.

We are giving her jigsaw magnesium, and vitamin D3 two days at week as you seggested.

One hour afer Carnitine and magnesium is fine for feed her? it would be absorved by then?

[Aleta]

Milk at breakfast and before bed will be fine? I can start to try that. I would very happy if she gets more solid food.