Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

the last link ask for a password

do not understand this

[Aleta]

ask for a user name and a password to enter the page

https://login.medscape.com/login/sso/ge ... zg=&ac=401

[Aleta]

should we ask for D Ribose prescription too?

[Willy]

ask for a user name and a password to enter the page

https://login.medscape.com/login/sso/ge ... zg=&ac=401

Stupid Medscape system forget about the page

[Willy]

should we ask for D Ribose prescription too?

No, start the magnesium discussion first

D-ribose is too exotic

[Aleta]

No prescription for magnasium, the pediatrician said that is gonna get diarrea and lost the meds she is taken with it. As we insist, the metabolism doc is gonna Mail us and see if we can start with los dosis.

[Willy]

I calculated the doses already.

The doctor is wrong and right about diaree

If you give Lara magnesium oxide she will get diaree so she is right

But we do not, so she is wrong

We will give her magnesium bonded (coupled) to an amino acid

So we wait what the metabolic doctor has to say about it.

If he rejects magnesium I will provide you the correct information why you should give her magnesium

Then, if you agree with me, we will look for a good product

DO NOT GIVE HER MAGNESIUM OXIDE IF THE DOCTOR PRESCRIBES IT NOT EVEN IN A LOW DOSES

[Aleta]

hi Willy. the answer about q10 powder was "there is no other way in Argentina, if you know some other presentation let me know", and about the magnesium said "is long to talk about this via email, lets talk in the next appointment", so, i´ve call the hospital and ask for appointment, they give me august 28, and email her to ask if she can see us earlier ( that is my boy birthday; don´t wanna leave him that day), still no answer. we have time to start with magnesium anyway?
Lara was a little bit agitated when she drank her bottle of milk last night and today, I´m very worry
this was not happening. the rest is fine, she gain weight and her motor skills are improving every day, but worries me that she can´t handle the physical chalenge of growing. it seem like the pediatrician give her bad luck, he ask us if she was agitated when she drink and we said "no", and after that she was! he saw her very good, and I ask if with seeing her that good we can make a proyection and he said "it´s a day by day", aaagh. so frustrating. going nuts today.

[Willy]

Maybe she had just a bad day.

I think that the metabolic doctor means that she can only prescribe q10 powder in Argentina. Sire you can buy Q10 soft gels in your country

Do this google search

cápsulas de gel de compra q10

You can mail order a gel based 60 mg Q10 based product and show it to her next visit

But........

I told you the 150 mg powder is fine, the high doses counteracts the low vio avalability

Try to find a magnesium connected to an amino acid on the internet and mail me the specifications.

We have time enough

Is lara now on the carnitine and the Q10?

[Aleta]

yes 150 mg q10 and 500mg of L Carnitina from Albicar brand (since yesterday, before we got the compound with a preparation that we have to give her a lot, we didn´t reach the 500mg/day), she is doing fine, maybe one more dipper to change but not to much.

[Willy]

So from the 13 of august she is using the correct doses q10 and carnitine, I will add that to her file

See my post on how to check with google for a gel based Q10

I am going to bed now

[Aleta]

good night!

[Aleta]

Willy, L Carnitine can decrease appetite? or maybe she may feel full? it maigh gain or lose weight?

[Willy]

Hi Willie, I;m writing you because Lara is eating less then usual, and this last days it was very difficult to give her milk, her regular dosis is 600 ml and she is almost reaching the 400ml, somethimes 450 ml.
Could be something with the carnitine dosis? Or just her condition?

We are trying to find explanations of Lara's eating behaviors besides her heart condition, maybe there is not another thing, I don't know, maybe you do.

Thanks in advance,
Sebastian

This is what Sebastian wrote to me via email

[Willy]

You have to discuss this with your doctor also!!

Carnitine has as a side effect diaree, not loss of appetite

How many ml carnitine are you giving Lara?

Maybe she is not thirsty any more because she is drinking the carnitine fluid