Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

Hi Willy and Corrij,

we were talking with Sebastian and it seems not likely be milk´s fault. If the body compete with 300mg-1000mg of calcium, Lara is having more or less 450 mg of calcium.
Anyhow, we are agree and the pediatrician too, that Lara needs more food and less milk, our concern is what exchange fore milk. Soy milk would be an aswer but 90% of soy is transgenic in Argentina thans to Monsanto
is scary give soy to a child, we gonna try to find some organic and trusted stores.

What we really believe is in two hypothesis:

1) Q10 left in water for a period from 15 to 1 hour. that is what it was going on since at least 3 months.

2) Lara´s activity. since december/january she is non stopable. Maybe MAYBE..... her heart was more demanded and her meds were not enough and the protocol couldn´t make his job becasue she has having very little anelapril, spironolactone....?

And one more but this is a random idea. She showed in the last blood test be inside the normal range of D3, but before was high, remember? that is way we give her D3 two times a week. What if that was toxic in her body and interfered in the absortion of supplements and meds?

We´ll be make changes in her diet, less sugar, less milk and nothing at all of salt.
Now we have to figure it out what give her instead, she is hard to handle with food, does not like friuts! and loves averything sweet. Will try stevia instead of sugar. You have any sugestion more, because we are runing ot of ideas.
almond milk? is not to oil for her?
chia seeds?
Super liquefied juice of sesame, chia and almonds? any seed more could be have a nice flavor and good for her heart?

We are trying to get her a high calorie diet, because she is growing slowlly, more even now that she is spending all that energy, so this is a clallenge, but will do it!

Have a good start week!

Aleta.

[Corrij (therapeut)]

Hi Aleta,

Soy milk is clearly not a good option as high amounts of isoflavones (plant estrogens) disrupt the hormonal development of young children. Commercial rice milk is high in sugar and low in nutrition with little to no protein or fats to stabilize the blood sugar. Even store bought almond milk is not a good choice as it is also very low in protein and fat, high in sugar and is not made from almonds that have been properly soaked/dehydrated first to eliminate anti-nutrients such as phytic acid which block mineral absorption and cause digestive distress.

This drink contains the same amount of calories and calcium as cow’s milk and is high in good fats to stabilize the blood sugar in those active toddlers and children who, without good fats in the diet, will constantly be clamoring for refined carbs.

Ingredients
14 oz whole coconut milk with no additives or make it yourself (click here to watch video how-to)
2 1/4 cups filtered water
2 TBL Grade B maple syrup (use a pinch of stevia powder for sugar free version) (sources)
1 tsp vanilla extract (sources)
1 tsp dolomite powder (sources)
Instructions
Mix all ingredients together in a medium saucepan over medium to low heat until all the dolomite is dissolved. Serve immediately or refrigerate.

While almond milk from the store is not a good choice, the homemade version is both delicious and nutritious.

Ingredients
2 cups skinless raw almonds (sources)
Filtered water
2 tsp sea salt (sources)
1/4 cup fresh lemon juice or raw apple cider vinegar (sources)
1/8 cup coconut sugar, sucanat or raw honey (sources)
1 tsp vanilla extract (sources)
1 tsp almond extract (sources)
Instructions
Soak almonds overnight in filtered water and sea salt. Drain off soaking water and process almonds in a food processor until a smooth paste. In a 2 quart glass jug mix almond paste with other ingredients and enough filtered water to fill the jug. Cover tightly and leave on the counter for 2 days. Refrigerate. Stir before serving.


Like most dietary supplements, vitamin D may interact or interfere with other medicines or supplements you might be taking. Here are several examples:

Prednisone and other corticosteroid medicines to reduce inflammation impair how the body handles vitamin D, which leads to lower calcium absorption and loss of bone over time.
Both the weight-loss drug orlistat (brand names Xenical® and Alli®) and the cholesterol-lowering drug cholestyramine (brand names Questran®, LoCholest®, and Prevalite®) can reduce the absorption of vitamin D and other fat-soluble vitamins (A, E, and K).
Both phenobarbital and phenytoin (brand name Dilantin®), used to prevent and control epileptic seizures, increase the breakdown of vitamin D and reduce calcium absorption.

Aluminum interacts with VITAMIN D
Aluminum is found in most antacids. Vitamin D can increase how much aluminum the body absorbs. This interaction might be a problem for people with kidney disease. Take vitamin D two hours before, or four hours after antacids.

Calcipotriene (Dovonex) interacts with VITAMIN D
Calcipotriene is a drug that is similar to vitamin D. Taking vitamin D along with calcipotriene (Dovonex) might increase the effects and side effects of calcipotriene (Dovonex). Avoid taking vitamin D supplements if you are taking calcipotriene (Dovonex).

Digoxin (Lanoxin) interacts with VITAMIN D
Vitamin D helps your body absorb calcium. Calcium can affect the heart. Digoxin (Lanoxin) is used to help your heart beat stronger. Taking vitamin D along with digoxin (Lanoxin) might increase the effects of digoxin (Lanoxin) and lead to an irregular heartbeat. If you are taking digoxin (Lanoxin), talk to your doctor before taking vitamin D supplements.

Diltiazem (Cardizem, Dilacor, Tiazac) interacts with VITAMIN D
Vitamin D helps your body absorb calcium. Calcium can affect your heart. Diltiazem (Cardizem, Dilacor, Tiazac) can also affect your heart. Taking large amounts of vitamin D along with diltiazem (Cardizem, Dilacor, Tiazac) might decrease the effectiveness of diltiazem.

Verapamil (Calan, Covera, Isoptin, Verelan) interacts with VITAMIN D
Vitamin D helps your body absorb calcium. Calcium can affect the heart. Verapamil (Calan, Covera, Isoptin, Verelan) can also affect the heart. Do not take large amounts of vitamin D if you are taking verapamil (Calan, Covera, Isoptin, Verelan).

Water pills (Thiazide diuretics) interacts with VITAMIN D
Vitamin D helps your body absorb calcium. Some "water pills" increase the amount of calcium in the body. Taking large amounts of vitamin D along with some "water pills" might cause to be too much calcium in the body. This could cause serious side effects including kidney problems.

Some of these "water pills" include chlorothiazide (Diuril), hydrochlorothiazide (HydroDIURIL, Esidrix), indapamide (Lozol), metolazone (Zaroxolyn), and chlorthalidone (Hygroton).

Her vitamin D level was high but not toxisch.

greetings,
Corrij

[Aleta]

Corrij!

I was about to prepare coconuts and almonds myself!
I wasn´s sure if the stract of vanilla was a good idea, but thank you for the tip because she love vanilla.
I´ve already got free sugar stevia, the store was close to buy elmonds and coconuts but I´ll try later. A friend told me to use deshidrated coconut. I´ll add chia seed that has omega 9, I believe is gona be good for her?

We are alredy given one bottle less, so yesterday she had 450 ml of milk, nutrilon has calcium 89mg/100ml of milk, so we are close to not be a danger to the supplements. (which it was 300-1000 mg)

I preeeeey that she likes the elmond milk!

I{m gona buy some soy beans and see if she likes it, and use the water that left to make a soy milk.

We have in the matket one industrializated trand of soy milk, I have to check the nutrition facts on it.

I don´t know what dolomite is, I´ll research.

Also, I remember in the last blood test that the metabolic doctor asked, the magnesium was inside the normal range, close to be high. I really don´t suspect about magnecium, I´m more concened about Q10, it make sence?
We are giving it to Lara right before the night milk. (she sleeps drinking the bottle) is fine to do that?

Magnesium and carnitine togheter the most far from food or milk.

I remeber willy wanted to give Lara more magnesium but we had some poop isues, she is having 30mg twice a day, is to little or it´s fine? he wanted 50mg twice a day. We should try?


Thank you so much!!! I hope this works!!!


Aleta.

[Aleta]

re read you post. no soy milk! Sorry, I think about soy because all the soy a had when I was a child.

[Aleta]

made a quick experiment with elmond, chia seeds, water, stevia and vanilla extract. justo to see if she likes it.

It seems we had success! I´ll met the elmonds in water tonight, and make the recepie right, thanks!!!

[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.

Good idea but I want to check everything one by one. An Other form of Q10 is also possible

[Willy]

We first look at magnesium, this problem can not be solved if we discuss this randomly

But to answer your question, no milk, milk is over, she is to old, soy milk is out of the question to much side effects.

Back to magnesium

http://www.jigsawhealth.com/supplements/magnesium/

Youmaremusing sustained release magnesium so we van try to give here the dosis in ONE portion together with vitamin D, but NOT together with milk. That means at least one hour befor milk or three hours after milk

How much is Lara's weight at this moment. I want to calculate the dosis again

[Aleta]

HI Willy

One and a half month away Lara´s weight was 8,465. Tomorrow we have pediatrician and we will know how she weighs now, but my gess is no more than 9kg.

About magnesium with D3, we give her D3 only twice a week, remember? And now her levels are good inside the chart.

Magnesium could be given with the carnitine?

[Aleta]

Hi Willy and Corrij!

I´m reading about almond milk, and trying to research about nutrients equivalences, because Lara is a tiny girl, and I don´t want to her lose weight. I know she has to eat more solid, we are working on it, but if she doesen´t want to, we can´t force her to eat.

So, so far so good with almond milk, but I found this on internet:

baby
Like the tendency to replace cow's milk with soy milk in your baby's bottle, replacement with almond milk is equally dangerous. Almond milk is not an adequate source of nutrition for a baby and while breast milk or formula is replaced by almond milk, the baby will suffer from malnutrition and probably develop health complications for life. Even the occasional feed almond milk (altering breast milk or formula) is dangerous and not recommended. Studies of the Journal of the American College of Nutrition have shown autoimmune thyroid disease in babies fed almond milk. The concentration of chemicals generators goiter in relation to the body of a baby is much greater than when consumed by an adult. Therefore, even in moderation, the goitrogens such as almond milk should be avoided during childhood.

It kind of worried me.

Besides that, I´m super confused about the schedule for supplements, today I gave 2/3 magnesium in one take, and carnitine far of foods.

Tomorrow we have pediatrician appointment. Any question for her?


Regards,

Aleta.

[Aleta]

I don´t want to mess the topic, but here is the homework. if you want to, repost in other order it´s your call.
This are the reports after the PICU, one round of Levosimendan and diagnosis. This is from the begining of our current cardiologist.
It does not say anywhere about Z Score and reference numbers, all we know is the dimensions of lesft ventricule, sistolic and diastolic remains the same, which we don´t know exacly how good or bad is that. On that point we are blind.

IT´s a LOT.


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Lara: 5 months old, 25/6/14 (less than 6 Kg)




Situs solitus handset. levocardia

Atrioventricular concordance and
arterial ventricle

Septum interauricula: intact

Left atrium: dilated

Normal pulmonary venous return

Right atrium: normal.

Normal systemic venous return

Mitral valve: mitral annular dilatation with preserved and insufficient openness of

coaptation deficit severe

Tricuspid valve: normal


Left ventricle: dilated with global hypokinesia with severe impairment of systolic function

LVDD LVSD 32mm 25mm FAC ( shortening fraction) 20% left ventricular noncompaction,

trabeculas to epical and lower level (0,4 com thick pars compacta, pars noncompaction

0.8 rel 2/1)

Right ventricle: size and preserved contractility

Interventricular septum: intact

Aortic valve: central locking, tricuspid. Proficient. Arc laminar flow aortic coarctation No

image is observed.

Normal coronary arteries.


Pulmonary artery: normal.

Ductus arteriosus: Closed

Pericardium: Free.

conclusions:
Dilatation of left cavities and severe impairment of systolic funsion
Noncompaction cardiomyopathy
severe mitral insufficiency

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Lara: 6 months old, 23/7/14 (about 6,500 Kg)




Situs solitus handset. levocardia

Atrioventricular concordance and
arterial ventricle

Septum interauricula: intact

Left atrium: dilated

Normal pulmonary venous return

Right atrium: normal.

Normal systemic venous return

Mitral valve: mitral annular dilatation with preserved and insufficient openness of

coaptation deficit severe

Tricuspid valve: normal


Left ventricle: dilated with global hypokinesia with severe impairment of systolic function

LVDD LVSD 33mm 24mm FAC ( shortening fraction) 20% left ventricular noncompaction,

trabeculas to epical and lower level (0.4 cm thick pars compacta, pars noncompaction

0.8 rel 2/1)

Right ventricle: size and preserved contractility

Interventricular septum: intact

Aortic valve: central locking, tricuspid. Proficient. Arc laminar flow aortic coarctation No

image is observed.

Normal coronary arteries.


Pulmonary artery: normal.

Ductus arteriosus: Closed

Pericardium: Free.

conclusions:
Dilatation of left cavities and severe impairment of systolic funsion
Noncompaction cardiomyopathy
severe mitral insufficiency



-----------------------------------------------------------------------------------------





Lara: 6,5 months old, 06/08/14 (about 6,750 Kg)




Situs solitus handset. levocardia

Atrioventricular concordance and
arterial ventricle

Septum interauricula: intact

Left atrium: dilated

Normal pulmonary venous return

Right atrium: normal.

Normal systemic venous return

Mitral valve: mitral annular dilatation with preserved and insufficient openness of

coaptation deficit severe (HERE THEY FIRST REPORT MITRAL VALVE NUMBERS). insufficiency

gradient: 90 mmhg

Tricuspid valve: normal. PSP 40nmmhg (I don´t know what that is)


Left ventricle: dilated with global hypokinesia with severe impairment of systolic function

LVDD LVSD 33mm 24mm FA ( shortening fraction) 20% left ventricular noncompaction,

trabeculas to epical and lower level (0.4 com thick pars compacta, pars noncompaction

0.8 rel 2/1)

Right ventricle: size and preserved contractility

Interventricular septum: intact

Aortic valve: central locking, tricuspid. Proficient. Arc laminar flow aortic coarctation No

image is observed.

Normal coronary arteries.


Pulmonary artery: normal.

Ductus arteriosus: Closed

Pericardium: Free.

conclusions:
Dilatation of left cavities and severe impairment of systolic funsion
Noncompaction cardiomyopathy
severe mitral insufficiency


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Lara: 7 months old, 27/8/14 (about 6,950 Kg)




Situs solitus handset. levocardia

Atrioventricular concordance and
arterial ventricle

Septum interauricula: intact

Left atrium: dilated

Normal pulmonary venous return

Right atrium: normal.

Normal systemic venous return

Mitral valve: mitral annular dilatation with preserved and insufficient openness of

coaptation deficit severe. insufficiency gradient: 85 mmhg

Tricuspid valve: normal. Tapse 20 mm


Left ventricle: dilated with global hypokinesia with severe impairment of systolic function

LVDD LVSD 33mm 24mm FA ( shortening fraction) 20% left ventricular noncompaction,

trabeculas to epical and lower level (1,4 mm thick pars compacta, rear wall 6 mm)

Right ventricle: size and preserved contractility

Interventricular septum: intact

Aortic valve: central locking, tricuspid. Proficient. Arc laminar flow aortic coarctation No

image is observed.

Normal coronary arteries.


Pulmonary artery: normal.

Ductus arteriosus: Closed

Pericardium: Free.

conclusions:
Dilatation of left cavities and severe impairment of systolic funsion
Noncompaction cardiomyopathy
severe mitral insufficiency



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Lara: 9 months old, 23/10/14 (about 7,650 Kg)




Situs solitus handset. levocardia

Atrioventricular concordance and
arterial ventricle

Septum interauricula: intact

Left atrium: dilated

Normal pulmonary venous return

Right atrium: normal.

Normal systemic venous return

Mitral valve: mitral annular dilatation with preserved and insufficient openness of

coaptation deficit severe. insufficiency gradient: 80 mmhg MAPSE. 8 mm

Tricuspid valve: normal. PSP 30 mmhg Tapse 20 mm


Left ventricle: dilated with global hypokinesia with severe impairment of systolic function

LVDD LVSD 36mm 26mm FA ( shortening fraction) 28% left ventricular noncompaction,

trabeculas to epical and lower level (0,7 cm thick pars compacta, 0,3 rel 2/1)

Right ventricle: size and preserved contractility

Interventricular septum: intact

Aortic valve: central locking, tricuspid. Proficient. Arc laminar flow aortic coarctation No

image is observed.

Normal coronary arteries.


Pulmonary artery: normal. 0,7 mts/seg.

Ductus arteriosus: Closed

Pericardium: Free.

conclusions:
Dilatation of left cavities and severe impairment of systolic funsion
Noncompaction cardiomyopathy
severe mitral insufficiency



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Lara: 10 1/2 months old, 10/12/14 (about 8,250 Kg)




Situs solitus handset. levocardia

Atrioventricular concordance and
arterial ventricle

Septum interauricula: intact

Left atrium: dilated

Normal pulmonary venous return

Right atrium: normal.

Normal systemic venous return

Mitral valve: mitral annular dilatation with preserved and insufficient openness of

coaptation deficit severe. insufficiency gradient: 70 mmhg MAPSE. 8 mm

Tricuspid valve: normal. PSP 30 mmhg Tapse 16 mm


Left ventricle: dilated with global hypokinesia with severe impairment of systolic function

LVDD LVSD 30mm 20mm FA ( shortening fraction) 29% left ventricular noncompaction,

trabeculas to epical and lower level (0,7 cm thick pars compacta, 0,3 rel 2/1)

Right ventricle: size and preserved contractility

Interventricular septum: intact

Aortic valve: central locking, tricuspid. Proficient. Arc laminar flow 1,4 mts/seg. aortic

coarctation No image is observed.

Normal coronary arteries.


Pulmonary artery: normal. 0,7 mts/seg.

Ductus arteriosus: Closed

Pericardium: Free.

conclusions:
Dilatation of left cavities and severe impairment of systolic funsion
Noncompaction cardiomyopathy
severe mitral insufficiency

CARVEDILOL 0,5 MG/KG/DAY
ENALAPRIL 0,15 MG/KL/DAY
FURSEMIDA 1,75 MG/KL/DAY
SPIRONOLACTONE 3 MG/KG/DAY



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Lara: 14 months old, 19/03/15 (about 8,700 Kg)




Situs solitus handset. levocardia

Atrioventricular concordance and
arterial ventricle

Septum interauricula: intact

Left atrium: dilated

Normal pulmonary venous return

Right atrium: normal.

Normal systemic venous return

Mitral valve: mitral annular dilatation with preserved and insufficient openness of

coaptation deficit severe. insufficiency gradient: 70 mmhg MAPSE. 8 mm

Tricuspid valve: normal. PSP 30 mmhg Tapse 16 mm


Left ventricle: dilated with global hypokinesia with severe impairment of systolic function

LVDD LVSD 35mm 26mm FA ( shortening fraction) 24% left ventricular noncompaction,

trabeculas to epical and lower level (0,7 cm thick pars compacta, 0,3 rel 2/1)

Right ventricle: size and preserved contractility

Interventricular septum: intact

Aortic valve: central locking, tricuspid. Proficient. Arc laminar flow 1,4 mts/seg. aortic

coarctation No image is observed.

Normal coronary arteries.


Pulmonary artery: normal. 0,8 mts/seg.

Ductus arteriosus: Closed

Pericardium: Free.

conclusions:
Dilatation of left cavities and severe impairment of systolic funsion
Noncompaction cardiomyopathy
severe mitral insufficiency

CARVEDILOL 0,5 MG/KG/DAY (3,125 mg/day)
ENALAPRIL 0,3 MG/KL/DAY (5MG/DAY) - it doesnt´t make sense to me-
FURSEMIDA 1,75 MG/KL/DAY
SPIRONOLACTONE 3 MG/KG/DAY (25 mg/day)

[Willy]

HI Willy
One and a half month away Lara´s weight was 8,465. Tomorrow we have pediatrician and we will know how she weighs now, but my gess is no more than 9kg.
About magnesium with D3, we give her D3 only twice a week, remember? And now her levels are good inside the chart.
Magnesium could be given with the carnitine?

We continue the magnesium discussion

For an adult 70 kg the dosis is 200 - 400 mg magnesium = 2,86 - 5,71 mg / kg (3 - 6 mg / kg)

Lara is 9 kg that means between 27 - 54 mg / day

Jigsaw contains 500 mg magnesium / 4 tablets

http://www.jigsawhealth.com/supplements/magnesium/

that means 125 mg magnesium / tablet

With a max dosis of 54 mg / day that means 43% of ONE tablet. So not more then HALF a tablet per day divided into two equal dosis.

ONE HOUR BEFORE MILK OF THREE HOURS AFTER

Is this the dosis she is using at the moment????

With this 50% of a tablet per day dosis we have to check on diaree. In the case of diaree with this dosis go to A SMALLER dosis

[Aleta]

Hi willy!

That would be less than she is having until now....

Postby Willy » Fri Jan 16, 2015 5:12 pm

Try 2 x 30% of a tablet. So increase a bit. And watch out for diaree signs several days in a row

What should we do? I can´t find the post where you wantad to give her one entire tablet, but I remeber that, Am I wrong?

[Willy]

She needs 54mg per day max, that compares with an adult dosis of 400 mg

One tablet contains 125mg so half a tablt is sufficient

Now we have to optimize the biovailability by not letting milk cause any problems

2 x 30% of one tablet is not bad or wrong, but if we base our dosis on 9 kg then half a tablet jigsaw / day is sufficient

[Aleta]

Hi willy and Corrij.

We saw the pediatrician yesterday, Lara's weigh is 9.050 and 77 cm tall. In one month and a half she gained 400 gm and grew 1 cm. So that is good.
The ped saw Lara great, her heart sounds good for her, the murmur is almost unperceived.
She has no problem with Lara drinking less milk, in fact she aspect Lara starts to eat more solid food. What she don't get is if the calcium is the problem with magnesium, why give her almond milk which has a lot of it.
In about two weeks we gonna see another cardiologist specialist on cardimiopathy, to get more details on Lara's case.

What I can't get out of my mind is that supplement don't work on every child. This is what it could be happening? I'm really in panic now.

That's the knees.

Regards

Aleta.

[Willy]

Magnesium 2 x 25% of one Jigsaw tablet is sufficient. If 2 x 30% is NOT giving any signs of diaree then this is oke

MAGNESIUM 1 HOUR BEFORE OR THREE HOURS AFTER MILK

Oke we close the discussion on magnesium

Next discussion will be REDUCE Milk, salt and sugar