Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

My guess is that because of the reduced bioavailability of powder the doses the doctor prescribed is oke

You can check this with the pharmacy by asking them the doses for this Q10 product in mg / kg

So how much you have to give Lara per kilogram weight

For Q10 oil filled capsules that number is

Adult 200 - 400 mg per day with 70 kg --> 2,857 - 5,714 mg / kg

For Lara with 8 kg would the dosis oil filled Q10 be between 23 - 45 mg per day

So 30 mg as Corrij already calculated

[Aleta]

Ok, so maybe we are ok with this? would be bad idea besides the ubiquinone the doctor prescribed, give Lara a little ubiquinol to compansate?

In 3 hours we have pediatrician, then we will maybe know about that weird noise in Lara´s breathhing (wich has almost gone as the shortness of breathing) and how much exactly weighs.

No I have benjamin with 38,5° fever, a doctor check him at home, it could be the same cold Sebastian and I had, but with fever on him. I don´t know if Lara will catch it too, or she already has and that was the breathing all about. She don´t get of mocus outside her nose, she swallos all, so we really can´t tell if she has a cold, unless she feels very very bad.

I´ll tell you when we get back home, and if you think is necesary se the amounts of supplements.

I just noticed that we were given Lara more ribose than we need to... maybe 2,8 g... I hope that is not to much

[Willy]

Adult ribose 15 gram per day with 70 kg

15 / 70 = 0,214 gram / kg

For lara with 8 kg = 8 x 0,214 = 1,714 gram = 2 gram

More is not necessary, but not dangerous

What ever you do DONT PANNIC

[Aleta]

OK! I've sent you via email two photos of test results.
Cheers

[Willy]

Hello there

We want the levels to be high

If you measure my carnitine it is also too high

but thats what we want

sick hearts need more

Except for vitamin D, there we want to adjust to the references because large dosis are toxic

[Aleta]

Hi, here are the test results in english, I send you emails when a have to post pictures, and I don´t know how in the forum, you have to teach me that.

My worry is about magnesium, is not toxic?

English results:

dosage of serum carnitine
radioenzymatic method

TOTAL CARNITINE
value found 134,30 umol/L

FREE CARNITINE
vaue found: 103;80 umol/L

FREE CARNITINE %
value found: 77



REF VALUES:

Age TOTAL omol/L FREE umol/L FREE %

1 month-1 year 46-64 37-58 80-90
more than 1 year 46-70 41-58 80-90


MAGNESIUM IN BLOOD
Method: blue colorimetric xylidyl

Units: mg/dl

Value found: 2,5

ref values: 1.7 - 2.6



Some other levels are high, these are the test sent by metabolism doc.

urinary organic acids:
slight increase of 2 succinic acid methyl, 3 hydroxy adipic-lactone and suberic-unsaturated


and some more that I don´t know if it matters.

Methabolism doc thinks that it could have a mito issue, but the results are to slights, and also think that a child with no mito issues can have this results. still didn´t saw this results, and I went to look out for them AFTER the pediatrician :/ but last time told us to give Qo10 and carnitine because she dont know if this is what is working but no take it off for sure.

The cardiologist thinks that a mito isue have leves much more high, and the improvement is thanks to carvedilol and Lara´s cells development.

I find loginc in what you say, that even with no mito issue or deficiency, we can help the cells to have more energy and regenerate new ones in bad tissue.

Pediatrician fiand Lara great, weights 8,450 kg. She gain 150 gr but it´s a lot at this age. Grew 2 cm!
and thinks that breathing is because of laringe, but is a guess because it´s gone!

And the murmur it hears less than the last month, so she thinks that mitral valve is better. I HOPE SO!

so, that´s what we were doing today.

Oh, Lara´s brother Benjamin has fever, so we all catch the freaking cold!

Cheers

Ale.

[Willy]

WHAT EVER YOU DO DONT PANIC

Magnesium is not toxic, if it is too much it wants to get out --> diaree

Total and free carnitine are twice the max ref value. If the metabolic doctor does not object to this I would keep it this way.

Magnesium is within ref and the daily dose can be a little bit increased

I think you do now 30%'of the Yig Saw, try 40%, not 50!

Corrij this is the best bioavailalble magnesium accoring to Dr Van Meerendonk

[Aleta]

hahaha I´m not in panic!

Ok with magnesium then.

Good night, and thank you!!!

[Willy]

WHAT EVER YOU DO DONT PANIC

Magnesium is not toxic, if it is too much it wants to get out --> diaree

Otal and free carnitine are twice the max ref value. Of the metabolic doctor does not object to this I woild keep it this way.

Magnesium is within ref and the daily dose can be a little bit increased

I think you do now 30%'of the Yig Saw, try 40%, not 50!

Corrij this is the best bioavailalble magnesium accoring to Dr Van Meerendonk

added information

Yes I am going to read my book and go to bed

[Aleta]

now I´m giving her 25% in the morning and 25% at night. 50% at day.

how much should I try now? 40% in the morning and 40% at night?

[Willy]

Try 2 x 30% of a tablet. So increase a bit. And watch out for diaree signs several days in a row

[Aleta]

ok thanks!

[Willy]

Aleta this is the calculation for the dosis carnitine

Adult 3 x 2 x 330 mg / 70 kg = 28,285 mg / kg

for Lara 28,285 x 8,3 = 234,77 mg per day, and since it is extremely save 300mg would be fine

This is how we do it with the Dutch children. Sometimes parents double these values and use 500mg

Check this with what you give to Lara prescribed by the metabolic docter.

I know you use l-carnitine, we use that also in the Netherlands

[Aleta]

Ok great!

We have appointment with this doctor in march, but we´ll see if she can see this results via email.

Thank you than you thank you

[Willy]

Aleta is it possible for you to calculated the amount of miligam carnitine you use daily with your suspesion carnitine liquid?

Corrij and I have on monday a short telephone conference about how to proceed with Lara

No problems, but we review the amounts Lara is using