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

Bericht door Aleta » za jun 08, 2019 7:03 pm

Hi Willy!
Yes this is a good team!

Yo asked: Why did we decide to go for JigSaw magnesium time released? Diarree?
Yes, but she was a baby, maybe now she could handle other options like citrate. I get Malate magnesium only jigsaw and Now food. Citrate has more options, I couls even get some brand here in Argentina. Should we try?

About meds, the dosage is the same BUT, doc told us that if we forget one take we should not worry and give her the next take normally, and we don't have to be that precice with timein, we can be 2 or 3 hours late or early... she is only on Enalapril 1,25 mg at morning and 0.625 at night. (one 2,5mg pill at half in the mornig and a quarter at night)

Thank you so much! God bless you Willy!

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

Bericht door Willy » zo jun 09, 2019 11:45 am

Try magnesium citrate from Now Foods
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 Argentina, need help

Bericht door Willy » zo jun 09, 2019 11:48 am

Here you Will find info on how much magnesium is enough viewtopic.php?f=121&t=11650

Go for the lower dosis first

Magnesium 200 - 400 mg / 70 = 2,85 - 5,71 mg / kg --> 3 - 6 mg / kg
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 Argentina, need help

Bericht door Aleta » ma jun 10, 2019 4:54 pm

Hi Willy!

I have no permission to read that link...

Lara is having 1/3 of one jigsaw tablet (100mg) in the morning and 1/3 at night, someting like 33mg in the morning andd 33mg at night. 66mg at day.
Lara's weigh is 17,200kg, so 17,200 x 3 = 51,6. You say that we get lower dose now with jigsaw or when we start to use citrate?

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

Bericht door Willy » za sep 14, 2019 8:24 pm

Sorry voor late response

This the info
Q10 200 - 600 mg for adults of 70 kg --> 2,85 - 8,57 mg / kg --> 3 - 9 mg / kg

Acetyl Carnitine 1500 / 70 = 21,43 mg / kg --> 22 mg / kg

L carnitine van de huisarts 3 x 2 x 330 = 1980 mg / 70 = 28,29 mg / kg --> 30 mg / kg

Dosering carnitine kinderen Sigma Tau http://db.cbg-meb.nl/IB-teksten/h11193.pdf

Magnesium 200 - 400 mg / 70 = 2,85 - 5,71 mg / kg --> 3 - 6 mg / kg

D-ribose 15 gram / 70 = 0,2143 gram / kg --> 215 mg / kg = 0,215 gr / kg

Taurine 1500 / 70 = 21,43 mg / kg --> 22 mg / kg
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 Argentina, need help

Bericht door Willy » za sep 14, 2019 8:26 pm

Sorry Lara en Aleta voor late response

This song is for Lara, I hope it is the right language

https://youtu.be/oDEu39FLYpw
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 Argentina, need help

Bericht door Aleta » zo sep 15, 2019 5:19 pm

Thanks Willy!
And thank you for the beautiful song, she loved it :)

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

Bericht door Aleta » do nov 28, 2019 5:37 pm

Hi Willy!

I hope you are doing great!

Lara has her check up, everything went well.
Her shortening fraction now is 36%-39%, even better than the last time, but doc said that Lara is withing notmal range so 1 or 2 numbers up or down is the same.

Did not make the Z Score, so i´m not so sure how big her heart is but she said is the same, and that is almost not big, but it has like a globe shape, the same thing she told us last time, that maybe is the "scar" of all that her heart went throught.

She order Lara a 24 hours holter in jan 6, the first one, I hope everything is okand lara can handle it! I´ll tell you how it goes.

We keep supplements the same?

Lara is finishing preschool in two weeks, in march she starts elementary school, can you believe it?


Thank you for be with us all along

Cheers!

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

Bericht door Willy » do nov 28, 2019 11:17 pm

Is Max shortning fraction not 30?

What is her weight nog in kg?

Is the cardi reducing the MEDICINES?
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 Argentina, need help

Bericht door Aleta » vr nov 29, 2019 4:57 pm

I believe Shortening fraction max is 50?

Lara weighs 18,700 kg and is 1,14 mts tall

Meds are the same, enalapril 1,87 at day. I believe she will stay with enalapril, we´ve talked a few months ago about take off but now she said that will not adjust for now, so maybe is planning to keep Lara on Enalapril.
It is in one hand sad but in another is scary leave meds, so...

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

Bericht door Willy » wo mar 25, 2020 4:00 pm

Just follow the advise of your specialist en stop the PRIL literaturen is confusing at the moment on this subject
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 Argentina, need help

Bericht door Aleta » wo mar 25, 2020 7:21 pm

HI Willy!

I hope you are doing well.

What our cardio said is that the tests on ACE inhibitors related with Covid19 has been done with rats and there is no evidence on humans.
So, she wants to do more than less and in just in case, she changed the medication to the patients who could do so.

She told me that Lara takes enalapril in a very low dose and as a preventive, and that there was no problem with stopping the medication.
So,Lara stopped Enalapril on MARCH 16. It is scary but I see her just the same as usual. She has follow up next week but I don´t know if is wise to go out the house, I'll be wainting cardio call on that.

We ran out of ribose, a friend who came from the USA bought us a jar besides all the other supplements, but she is in quarantine and everyone is in confinement, so I don't know what to do with that.
We have all the other supplements, Ribose is super crucial in the protocol or we can be without it for a few days?
I guess that when my friend finish her quarentine i'll snick to her house and get the supplements...

This is such a mess

I hope you are all good there.

Hugs,

Aleta.

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

Bericht door Willy » di dec 01, 2020 4:33 pm

Did hou solve the ribose probleem?

How are things goeing in BA?

And hoe do you manage the corona crisis?

And of oud-secretaris-generaal, hoe is Lara?
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 Argentina, need help

Bericht door Aleta » wo dec 02, 2020 4:16 pm

Hi Willy!

So glad to read you!
We got Doctor´s best riboce for a while and then bak again with sourse naturals.

We managed to stay healthy this auful year.

Lara is doing great, she went to school two weeks this yearbefere the lockdown, after that was all homeschooling because school didn´t open until a few weeks ago, and there´s no case to send her and her brother because school year finishes next week. They start again on february 17, we´ll see how is the situation then.
Cardio said that there is no risk for Lara more than any other kid because DCM has no reapiratory problems, but as there´s no experience on kids with DCM catching covid, with Lara´s exact profile, we don´t really know. So, our house, was in fase 1 until the curve decreased.

Check ups were fine both this year. In the last one, Shortening fraction was 36%-37%, and in the las 5 check ups at least was 39%, I asked why was that and cardio said that difference is nothing, it changes nothing and I donñt have to worry because is inside the normal range.
Of course I worry but I´m trying not to think a lot about it. We have to come back in april for other check up.I will be very wworry, i can asure you.

I see your facebook updates so I know you are fine, I hope you really are!
We think about you a lot, please take care!

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