DCM and leaky mitral valve in 2 year old

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Irina
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DCM and leaky mitral valve in 2 year old

Bericht door Irina » za jul 22, 2017 6:08 pm

Hello.
I have a 1 year and 10 months old son, who was diagnosed with DCM and severe mitral valve leakage in October 2016. EF% was since then always around 20-30%, taking daily:
3 x 3mg Captopril
1 x 6 mg Furosemid
1 x 6 mg Spironolactone.

He did not show any signs of HF, he eats well and sleeps like any other kid of his age, is very energetic, runs all day long. His weight is a bit under, 9.5 kg now, born with 2.9 kg.

I have heard of this so to say "magic" supplements combination of Q10, carnitine, ribose and magnesium from a mother living in NL and was advised to post here. We live in Romania, a not so great country to be sick in with such a malformation and until I find a proper naturapath here, I am asking for your advise on the right dosage for these supplements.
Thank you in advance!!

Willy
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Willy » di jul 25, 2017 10:38 am

Hello Irina

You will get a lot of questions first

Why does your son not getting a beta blocker? Most of the time the name of this kind of medication ends on ...lol

DCM and leakage sometimes goes hand in hand because of dilitation of the heart

Or is there an other reason for mitral valve leakage?

Read my articles on heart failure https://translate.googleusercontent.com ... D9J9qDeGMQ
Met vriendelijke groeten,

Willy Witsel

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

Irina
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Irina » di jul 25, 2017 11:18 am

Hello and thank you for your quick reply,

Indeed my son does not take any beta blocker, only the enzyme inhibitor Captopril. To the question why, I do not have an answer, it was a decision of our cardio team, but I will elaborate a bit our story.
After receiving this diagnosis in Romania, we also had an appointment at the head of pediatric cardiology from AKH Viena,Austria to confirm our diagnosis and treatment. Prof. Dr. Behnke confirmed the diagnosis and the treatment we are receiving, she did not add anything else. But with the hope that somewhere, someone, has a better idea and is more up to date, we are also planning to see a ped. cardiologist in Bruxelles, later this year.

The leakage is a consequence of the DCM, it has not other reason.

Thank you for your time

Willy
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Willy » di jul 25, 2017 1:34 pm

Treatment is fine, only the beta blocker is missing. Normaly this is also prescribed for children

How often do you see the cardiologist? When is the next echo? Do you know the BNP or pro-NT-BNP blood value? What caused his DCM? Virus?

Can you buy quality supplements in Romania or do I have to send them from the Netherlands?

Do you want support via skype?
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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Re: DCM and leaky mitral valve in 2 year old

Bericht door Aleta » di jul 25, 2017 3:28 pm

Hi Irina, so glad you came here.
Willy is the best And I'm sure supplements will help.

Hugs

Aleta.

Willy
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Willy » di jul 25, 2017 4:24 pm

You know each other?

Argentina - Romenia is long distance!
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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Re: DCM and leaky mitral valve in 2 year old

Bericht door Aleta » di jul 25, 2017 5:16 pm

we've met via Saskia-Facebook

Irina
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Irina » wo jul 26, 2017 12:39 am

We used to see cardio every 2 weeks, but now we only have to go every 2-3 months apart. Next echo should be in September, but if we go to Bruxelles in September, then the one in Romania would be postponed.

I think BNP level was never measured, my son was only hospitalized once, for a bronchiolitis, when we also discovered the DCM. The given cause seems to be idiophatic, that is without any obvious cause, but we did not had any genetic testing. Cardio said it is not that important at this time to have invasive procedures to find the underlying cause. The doctor from Viena also said, the DCM seems to be there for at least a year. (he was 1 year and 3 months old when we were there).

Another mom from Romania, her son having the same condition, was told in Romania, that her sons DCM is genetic, but in Bruxelles she was told it was caused by a virus. I have also read about other ppl experiences, many of them with unknown cause of their DCM.

Supplements can be found here, the pharmaceutic industry is thriving for sure :) but I think I will order via iherb.com, because the price difference is huge. (e.g. Childlife Naturals - Cod liver oil is in Romania 22 euros, while on iherb is 11). I also have friends in Austria, Hungary, Germany, Belgium who can get the supplements for me.

We can also skype, if it is the case, I don`t want to hold up your time if not necessary.

@Aleta, many thanks on yours and Saskias input and advice. :D

@Willy, your help is highly appreciated. Have a lovely evening!

Willy
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Willy » di aug 08, 2017 1:49 pm

Sorry for late response I am on holiday
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
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Willy
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Willy » di aug 08, 2017 1:51 pm

Please lookup which of the following supplements you can by and post the product descriptions

First q10 and carnitine or acetyl carnitine

Then also magnesium, vitamine d and d-ribose powder

PLEASE provide latest pump function (sf or ejf) and BNP of pro-NT-BNP

If you do not know them ask the cardiologist

This is important because we want to see if things improve or not

From what I read sofar I think there is a change your son will respond good to the supllement treatment
Met vriendelijke groeten,

Willy Witsel

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

Irina
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Irina » za aug 12, 2017 4:46 pm

Hello, no problem :)
I shall research my buying options and get back as soon as possible.
Regarding EF % - it was 30% and BNP test was not done. (why, I do not know)

Thank you

Willy
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Willy » wo aug 16, 2017 4:18 pm

oke Irina, we can also ship the supplements from the Netherlands if that is nessesary
Met vriendelijke groeten,

Willy Witsel

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

Irina
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Lid geworden op: za jul 22, 2017 5:50 pm

Re: DCM and leaky mitral valve in 2 year old

Bericht door Irina » ma aug 21, 2017 4:58 pm

hello,

I have searched my options and found these supplements in my country. I think it would be easier to get them from here. What do you think, which is the best option?

Q10

1. Q-absorb CO-Q10 100mg Jarrow Formulas, 30 pcs[/i
Composition: Coenzima Q10 (Ubiquinona) 100 mg ,Vitamina E 4 mg

2. Coenzima Q10 30 mg, 30 pcs, Solgar
Composition: Coenzima Q-10 (KanekaQ10®) (ubiquinona) 30 mg

Carnitine / Acetyl-canitine

1. Acetyl L-Carnitine 500mg Jarrow Formulas, 60 pcs
Composition: Acetil L-Carnitina, 500mg/capsule

2. N-Acetyl L-Carnitine, 60 pcs, Zenyth
Composition: Monoclorhidrate of N-acetyl-L-carnitine 550 mg/gel capsule

Magnesium

1. Magneziu + Vitamina B6, 100 tablets, Solgar
Magneziu ( oxid) 400mg
Vitamina B6 ( piridoxine HCl) 25mg

2. Magnesium citrate 200 mg, 60 tablets Solgar

3. Calcium With Magnesium for children from Childlife Essentials, 474ml
Composition:
For 1 spoon (15 ml)
Calcium(citrate) 252 mg
Magnesium (citrate) 115 mg
Vitamin D(citrate) 100 UI
Zinc(citrate) 2 mg

Vitamin D

1. Vitamina D3 drops for children from Childlife Essentials, 29.6 ml
Composition per 8 drops: Vitamina D3 500 UI

2. Cod Liver Oil Childlife Essentials, 237 ml
Composition: Per 1 teaspoon (5 ml): vitamina A : 870-1950 UI, vitamina D : 0-40 UI, vitamina E : 8 UI, DHA (acid docosahexoenic) 700 mg, EPA (acid eicosapentaenoic) 450 mg, other fatty acids Omega 3 - 250mg
( we have used this before)

D-ribose

I have found only 1 option in a powder form, other were only chewables
D-Ribose, 140 g, Zenyth
Composition: 100% D-ribose from corn glucose

Many thanks,

Have a great afternoon,
Irina

Willy
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Willy » ma aug 21, 2017 6:27 pm

Buy the following products

2. Coenzima Q10 30 mg, 30 pcs, Solgar
Composition: Coenzima Q-10 (KanekaQ10®) (ubiquinona) 30 mg

1. Acetyl L-Carnitine 500mg Jarrow Formulas, 60 pcs
Composition: Acetil L-Carnitina, 500mg/capsule

2. Magnesium citrate 200 mg, 60 tablets Solgar

1. Vitamina D3 drops for children from Childlife Essentials, 29.6 ml
Composition per 8 drops: Vitamina D3 500 UI

I have found only 1 option in a powder form, other were only chewables
D-Ribose, 140 g, Zenyth
Composition: 100% D-ribose from corn glucose
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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Berichten: 13241
Lid geworden op: di okt 09, 2001 3:00 am
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Re: DCM and leaky mitral valve in 2 year old

Bericht door Willy » ma aug 21, 2017 6:31 pm

We will start with Q0 and carnitine

I will calculate the right dosis
Met vriendelijke groeten,

Willy Witsel

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

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