Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

Hi Willy!

No, she doesn't take taurine and never has.

[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?

[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!

[Aleta]

I forgot!
I can’t find ubiquinol in 150mg capsules, can I give her 200mg in the morning and 100mg at night?

[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/

[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.

[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

[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?

[Willy]

Sorry for the late reaction

2 x150 Q10 = 300 mg

So with the 100, 200 mg Q10:

100 mg in the morning
200 mg in th eavening

100 + 200 in the eavening is also an option

[Aleta]

Hi Willy, I hope you're doing well. I'm writing because we thought Lara was out of the woods for good, but last week she had her cardio checkup.
Lara is 11 years old and is already in puberty, a stage where the cardiologist had told us there might be some changes, or maybe not, and since she'd been stable for so long, I hoped not.
But in last week's echo, we saw that her function had dropped a bit, now outside the normal range, so she's on medication again. For years, it remained between 30-34, and now it's at 28-32. It's not a big change, but it warrants medication.
What the doctor told us is that during these years of hormonal changes (until 14 o 15), we'll be more vigilant, and that with medication, the best we can hope for is for her function to remain stable at these numbers, but she doesn't think will improve because in genera it doesent.
Also, she can't predict what her heart will do at this stage, but with medication, she'll be much better than without.
I don't understand why her numbers couldn't improve. Is it because of adolescence? Does function stagnate at these levels in all cases, or is it Lara's particularity?
I know it's not that low, and I shouldn't be so worried, but I'm worried that it will continue to decline. Our next checkup is in 4 weeks, and her medication will be increased. She's now on 2.5 mg of enalapril twice a day. Her goal is to get to 5 mg twice a day. Also, she is always on the protocol.
I'd like to know your thoughts on this, Willy.
Sorry for the long text.
Best,
Ale.

[Willy]

The cardiologist is currently giving her enalapril. Will she be adding a beta blocker?

Are you still giving her all the supplements, or are you giving her some less often or not at all?

Which supplements is she currently taking? Please also tell us the dosage.

Is she experiencing any symptoms, or has her pumping function decreased somewhat without her noticing?

What is her weight?

[Aleta]

Hi Willy,
Lara is taking all the supplements:
500mg of acetyl L-carnitine twice a day
300mg of ubiquinol a day
400mg of magnesium a day
one scoop of the spoon that comes with the ribose, twice a day
Her function went down, but she doesn't have any symptoms. We find out at her six-month checkup.
Cardiologgist won't add a beta blocker for now, just increase the enalapril to 5mg in two months.
Lara weighs 47 kilos.

Thank for being here willy