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

Geplaatst: za jun 08, 2019 7:03 pm
door Aleta
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!

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

Geplaatst: zo jun 09, 2019 11:45 am
door Willy
Try magnesium citrate from Now Foods

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

Geplaatst: zo jun 09, 2019 11:48 am
door Willy
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

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

Geplaatst: ma jun 10, 2019 4:54 pm
door Aleta
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?

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

Geplaatst: za sep 14, 2019 8:24 pm
door Willy
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

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

Geplaatst: za sep 14, 2019 8:26 pm
door Willy
Sorry Lara en Aleta voor late response

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

https://youtu.be/oDEu39FLYpw

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

Geplaatst: zo sep 15, 2019 5:19 pm
door Aleta
Thanks Willy!
And thank you for the beautiful song, she loved it :)

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

Geplaatst: do nov 28, 2019 5:37 pm
door Aleta
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!

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

Geplaatst: do nov 28, 2019 11:17 pm
door Willy
Is Max shortning fraction not 30?

What is her weight nog in kg?

Is the cardi reducing the MEDICINES?

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

Geplaatst: vr nov 29, 2019 4:57 pm
door Aleta
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...