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.
Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » zo apr 17, 2016 12:11 pm

In my opinion you do not have to increase the dosis

Corrij?
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Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » ma apr 18, 2016 5:33 pm

Hi Aleta,

I wouldn`t change it yet.
A adult takes 1500-2000 mg a day, so 1000 mg a day for a child with her weight is enough at this moment,

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

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » ma apr 18, 2016 5:43 pm

Hi!

Then we are ok with all suppements. I hope to see Lara improve more.

Thank you so much for your advise, you are so awesome.

Next cardiologist appointment is at June 2.

have a great week!

Aleta.

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » zo mei 01, 2016 3:49 pm

I missed this conversation, something is wrong with the forum I do nog get a notification email

I agree with Corrij the carnitine is enough for the moment.

Carnitine is very save for children so 1000 mg will not cause problems

Sometimes it causes diaree.
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Willy Witsel

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Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » vr jun 03, 2016 5:07 pm

Hi Corrij and Willy! We haven't spoke in a while, so I hohpe you to are doing great.

Lara had her check up with the cardiologist yesterday.

This time her SF numbers are the same than the last check up, two months ago (SF 28-32%), a little below the normal range. I was hoping be inside the normal this time but I'm honna have to be more patient. :cry:

What is 2mm smaller is her ventricule :) Lara is been growing (11.900kg, 89cm tall) and the dilated part of the heart doesn't, which is great and I'm so grateful for that, she have to keep it this way!
Doc made the Z-score, june 2015 was DDVI Z-score +5, and DSVI Z-score +7.2, and now is: DDVI Z-score +4 and DSVI Z score +4,1. So, Z score is getting better and even, which speaks of a better function.

Doc told us that we have to take care of Lara from virus and stuf, but she can do a normal lfe like any othr kid, she even can skate with me! And next year start kindergarden!

I'm grateful and frustrated at the time, I can't wait for see her inside the normal range of SF, also I'm scare that she don't get anymore improvement on that :(

But I know a year ago, things were very diferent and this is like a miracle, Lara is growing strong and beautiful and things seems like normal around here.

I hope I can do more to help Lara improve but I get I'll have to wait and go with her flow.

Best and warmest regards.

Aleta.

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » do jun 09, 2016 3:47 pm

Thank you for the update.

Be patient, that is the best attitude here. So I was right, Lara will outgrow here condition

Here body grows but her heart stays the same size

Still a lot of good news in your message!!

The only thing that stayed the same is SF, not bad not bad at all
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » do jun 09, 2016 4:03 pm

Hi Willy!

Yes, there are some good news, I hope the good ones keep coming!

I say thanks for have found you (via Saskia, of course), every day :)

Lara's weigh is 12kg, is having 1/3 of a jigsaw tablet in the morning and 1/3 at night. Is that enough for her?

Did I told you that she does not wear diapers anymore? only at nigh for sleep. And she takes two diuretics! I'm so proud of that little-growing girl.

As always, thank you for be there

Cheers and hugs,

Aleta.

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » di jun 21, 2016 9:13 pm

Hi Willy and Corrij, I hope you are doing great.

I have a question that you might know the answer. In the parents group where I met Saskia, a mom found a conection between the rotavirus vaccine and DCM, is that possible???

Lara is doing great, has a cold but she is a ninja girl :)

When you have time, cand you send me (again, so sorry) the relation weigh/supplements? I'm not sure if we have to encrease something, she hit the 12KG :)

Besides that, I wanted to check if you are ok, we don't talk for a while.

Warmest regards

Aleta.

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » zo jul 03, 2016 1:34 pm

This is the first day I am realy feeling well!!

Reduced my medication because it had extremely bad side effects

I hope it stays like this
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
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Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » zo jul 03, 2016 1:36 pm

I looked it up in PubMed

http://www.ncbi.nlm.nih.gov/pubmed/?ter ... iomyopathy

Their conclusion

However, making general assumptions and drawing conclusions about vaccinations causing deaths based on spontaneous reports to VAERS - some of which might be anecdotal or second-hand - or from case reports in the media, is not a scientifically valid practice.

I would say it might be possible but not enough research
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
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Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » zo jul 03, 2016 1:41 pm

For the calculations you have to read back on the forum and if you find the right post then click on QUOTE to bring it to the front of this message thread. Do so for all calculations
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: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » zo jul 03, 2016 10:17 pm

This is for Qo10

Willy schreef:This is the FIRST TIME EVER in my experience that a docter gives Q10 and carnitine for this condition

EXCELLENT

The q10 dosis is high as saskia explained already. But Q10 is extremely safe so do not worry

What kind of Q10 is she giving to your child? Can you ask that?

This is how you calculate the dosis if you use standard over the counter supplements

For an adult 200 - 400 mg is fine. If he weighs 70 kg that means

2,85 - 5,71 mg / kg now you can calculate the dosis for your child

What is her weigh in KG?

How much miligram carnitine is 2,5 ml ??

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

Bericht door Aleta » zo jul 03, 2016 10:19 pm

For Carnitine:

Willy schreef:I do not understand de carnitine dosis because I do not understand what you wrote about it

A 70 kg adult will get 3 x 2 x 330 mg = 1980 mg per day

That is 282 mg carnitine / kg

So 300 mg carnitine / kg is fine and I would not argue with the doctor if the dosis is higher

But NOT LOWER then 300mg carnitine / kg weight

Because carnitine is as Q10 extremely safe

Now you have to calculate the per day dosis for your dougther based on her weight

HOW MUCH does your doughter weigh at the moment in kilograms

OTHER PARENTS READING THIS PLEASE HELP

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

Bericht door Aleta » zo jul 03, 2016 10:29 pm

For Magnesium

Willy schreef:I advise 200 - 400 mg magnesium to an adult like me 70 kg

That means 2,9 - 5,7 mg / kg / day

Lara is at the moment around 8 kg tha dosis for her is

22,8 - 45,7 mg / day

So a dosis between 30 - 50 mg is fine per day. That means 2 x (15 - 25) mg because it is better to devide the daily doses.

The magnesium should be binded too an amino acid for optimal absorbtion (bio availability)

So for instance magnesium citrate is good

Sometimes doctors subscribe magnesium oxide. DO NOT USE THIS FORMULAE

This will not be absorbed

Magnesium sometimes gives diaree after a week or so. In that case you should take 50 % of the doses

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

Bericht door Aleta » zo jul 03, 2016 10:40 pm

Finally! Robose. Looking for all of this and reading, I was thinking about the BIG help you are giving us and how supportive you are, specially in the diagnosis first times. THANK YOU SO MUCH!!!

Willy schreef: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

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