Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

Lara is having 500mg of L carnitine each day, 250mg in the morning and 250 At night.

She catched our cold

[Willy]

Oke thank you

Do not forget yhe 2 x 1000 IU vitamin D3 per week

[Aleta]

Yes, I gave it today and last thusday.

Thank you!

[Willy]

I had a telephone meeting with Corrij yesterday, also about how to proceed with Lara

Lara was not critically ill. So clinical improvements are a bit difficult to see but they are there, but less obvious

We see here grow, gain wait and do more. Basically you can say she looks like a child of here age. That is excellent.

If we look at the diagnostics, bnp, ejf, mitral valve we see progress too.

The next phase would be that Lara is able to heal the non compaction issue. We have to wait and see.

[Willy]

About the dosis she is using at the moment we have some suggestions using this formula

(Adult dosis / 70) x Lara kg

Lara has to overcome noncompaction therefore I take higher dosis

MAGNESIUM (200 - 400) / 70) x 8,3 = 24- 47 = 25 - 50 mg per day

At the moment Lara is almost at the end of the REF so 60 mg will be the max dosis for the moment

Diaree is a contra indication

L-CARNITINE (1980 / 70) x 8,3 = 234 = 300 mg per day

At the moment she gets from the metabolic docter 500 mg. I think this is safe and some parents of children in the Netherlands also use higher dosis then calculated.

At the moment Lara's blood value is double the max ref. I think this is not a problem but you can check this dosis with the metabolic docter

[Willy]

Q10

(200 - 400 / 70) x 8,3 = 24 - 47 = 25 - 50 mg oil based Q10

Q10 is extremely save and the max dosis for Lara is 145 mg oil based Q10. Emma is getting 150 mg from Saskia. We think that is a little bit to much.

The metabolic docter prescibes 150 mg powder. This is less bioactive. Corrij thinks 40% less active and I think 80% less active

Ask the metabolic docter if he thinks that 150 mg is still the rigth dosis for Lara.

[Willy]

D-RIBOSE

(15 / 70) x 8,3 = 1,778 gram = 2 gram per day

More is not necessary

[Aleta]

Hi Willy and Corrij!

Thank you so much for care about Lara!

Lara is with a cold now, she has a lot of mocus wich she swallows, so I would raise up the magnesium when the cold is over, because if the mocus get her diaree, we will not know if was the mocus or the magnesium as the last time. is that ok?

About the Qo10 I know Emma is getting a lot, but she had an amazing improve, the las cardiology check was very good. We still have to talk with the doctor, she is not so friendly about answer emails

The non compacted ventricule: almost every doctors agrees that the non compaction can improve a little, have a few less trabeculations but always be there. But the truth is that still there is not to much knowledge about it. some say that this come from utero but others don´t, as the pediatrician fo example. But they agree that she could live a long life with no complications with that ventricule non compacted, the big worry for what I know is the mitral valve, the EF, and the dilatated part.

The dilatation at the moment, since 7 month today from diagnosis haven´t grown, the measures are the same, and in the last echo was 3 or/4 mm less than the other. But the cardiologist didn´t give to much importance, I believe she is focused in mitral valve and distolic function wich is very reduced. The mitral valve today has %70 of deficiency, wich at first was %90.
But I belive is important that the dilatated part of the heart wasen´t grown, because the rest of her heart has to be bigger by now, right? and if is more contractible maybe is not just carvedilol helping, maybe is new tissue working, hank to all the energy the supplements provide. Am i right?

If you want to I´ll send you the last report with sizes an information.

we´ll try too reach the metabolic doctor today, I think she is in the hospital, and let you know.

If she thinks the 150mg of Qo10 are right (in powder), it´s a good Idea give Lara a little more in soft gel?


Regards,

Aleta.

[Willy]

No if 150 mg powder is still the right dosis keep it this way.

Never change a winning team

We will review the supplements again if she does not improve any more. But I expect we are on the right track.

SO DO NOT PANNIC bit enjoy coughing and sneezing Lara

Sometimes children "grow out of" the dilitation.

[Aleta]

ok, I was in panic but I´m better now

I was about to find a pharmacy that can prepare the Qo10 capsules with ubiquinol, not ubiquinone like now. is not a good idea?

I was talking yesterday with a pharmacist, and he told me that often they prepare Qo10 with the one they got depending on the market (ubiquinol or ubiquinone), so I wanna track wich pharmacys got ubiquinol to prepare.

The metabolic doctor answer the mail! she said that the test was ok, and she will see us next week to give us a certificate of the meds she is prescibing Lara, for the health care. So I guess the doses will be the same, she didn´t mentioned nothing about it.

so, try to find ubiquinol?

Cheers

Aleta.

[Willy]

No not now

The metabolic docter does a good job with subscribing Q10 and carnitine although laboratory tests tell here that this is not necessay in Lara's case

Lara is improving, we do not need to change, there are no critical issues.

We stay on this course, I am a sailor

See this video when we had an engine failure on the middle of the sea

You hear my voice and see my wife cora

https://m.youtube.com/watch?v=FuhTFMD6yDs

[Aleta]

you have an engine problem in the middle of the sea, and you sound so calm, wow!

[Willy]

But Cora was not

I said to here

Do you want to say somthing in this movie to our audience

And she said

NO I am not in a very good mood today.....

And then we had to sail 11 hours to the nearest habour

[Willy]

This is an other hobby, rockets

You hear my voice https://m.youtube.com/watch?v=Ail9ujdwiGA

And this is my youtube channel https://m.youtube.com/user/wwitsel

[Aleta]

You are a fun guy!!!

this is what I love to do, and lucky for me, what I do for living:

https://www.facebook.com/aleta.vidal/me ... 174&type=3

and this is what Sebastian does too:

https://www.facebook.com/sebastianpablo ... 443&type=3

My hobbie is roller skate and collect comics, when I´m in panic I hug my childrens or do one of those things

Thanks for share this!