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Re: Baby girl, dilated miocardyopathy from Argentina, need help
Geplaatst: wo feb 21, 2024 5:06 pm
door Aleta
Hi Willy!
No, she doesn't take taurine and never has.
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Geplaatst: di mar 12, 2024 2:19 pm
door Willy
I'm going to recalculate what Lara needs in supplements. We have not increased the dose in recent years. But her weight has increased to 39kg
Here you can read more about the dose for children per kilo
viewtopic.php?f=121&t=11650
The dose for the supplements will then increase. But is good for a girl who weighs 39 kg.
Q10 150 mg - - > 2 times a day 150 mg
Carnitine 2 x 500 mg - - > 2 times a day 500 mg (the same)
Magnesium 2 x 100 mg - - > 2 times a day 2 x 100 mg (400 per day)
D-Ribose ???? - - > 2 times a day 4 grams
There has been no contact with Lara for a long time. During those years I have also found other supplements that work very well for heart failure. You might consider adding them.
Taurine 2 times a day 500 mg
Selenium methionine 1 times a day 100 mcg (not more)
We will then keep this dose. We then no longer compensate for her weight gain. The six-monthly check-up then indicates how she is doing on this fixed dose.
Do you think this is a good plan?
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Geplaatst: vr mar 15, 2024 8:13 pm
door Aleta
Hi Willie,
thanks for doing the calculation!
We are going to increase the dose, my only question is about the ubiquinol. I thought 150mg was the maximum dose. I'm mistaken?
As for the other supplements to add, I'm going to find out how to get them here in Argentina or in US, and talk to the cardiologist to see what she thinks.
The next appointment is in June so we have some time to try this new dose.
There were three consecutive controls where the function decreased a little but in the last one in December it was the same, in the normal lowest range. I hope that with this it will go up again!
I was hoping that Lara could stop some supplements, but I find it difficult and I'm also afraid to try.
thank you very much Willie, I will try to talk to the cardiologist about the new supplements before June, I will keep you posted!
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Geplaatst: vr mar 15, 2024 8:21 pm
door Aleta
I forgot!
I can’t find ubiquinol in 150mg capsules, can I give her 200mg in the morning and 100mg at night?
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Geplaatst: za mar 23, 2024 11:48 am
door Willy
We are going to increase the dose, my only question is about the ubiquinol. I thought 150mg was the maximum dose. I'm mistaken?
Max dosis for adults 1200 mg.
1200 / 70 kg = 17 mg / kg
For Lara is de max 17 x 39 kg = 688 mg
I can’t find ubiquinol in 150mg capsules, can I give her 200mg in the morning and 100mg at night?
What dosis do you give at the moment?
As for the other supplements to add, I'm going to find out how to get them here in Argentina or in US, and talk to the cardiologist to see what she thinks.
Give her this research
https://pubmed.ncbi.nlm.nih.gov/34902677/
https://pubmed.ncbi.nlm.nih.gov/3888464/
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Geplaatst: di mar 26, 2024 4:20 am
door Aleta
Hi Willie,
Now Lara is having ubiquinol 150mg only at morning.
Already increased Magnesium and ribose, now we gonna start to increase ubiquinol.
I was worried that I would run out of bottles of ubiquinol but we already ordered more from the US and they will arrive in a few days.
I was also worried about Lara's stomach so the magnesium increased it slowly.
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Geplaatst: do apr 04, 2024 5:44 pm
door Willy
Now Lara is having ubiquinol 150mg only at morning.
Let her take 2 x 150 mg, one in de morning and one in the eavening
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Geplaatst: do apr 11, 2024 2:07 pm
door Aleta
Hi Willie!
This is how we are giving it now because we have 100 and 50 mg capsules. But we already received the ones we ordered for 100 and 200, how do we give them those?