Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

she is having 500mg, in two doses of 2,5ml

[Willy]

That is not much compared to the milk. Try skipping one carnitine doses and see if she is drinking more milk

Children with heart failure have a problem with eating. Therefor they are slmetimes when they are realy ill on parental njtrition (food via tube directly to stomach)

But Lara had no problem with eating a few weeks ago, the only thing that has changed is the q10 and the carnitine

Do the parents of the other children have an idea what causes the loss of appetide

[Aleta]

she always been complicated to eat, but a few days ago it got whorse, I hope she is having just a bad days... don´t want a tube!

[Willy]

All children I was involved in with cardiomyopathy had problems with eating. But there conditions was much more serious then Lara's condition at the moment.

Maybe the other parent on this forum have idea's that could help.

[Aleta]

I don´t quite understand what´s the problem with eating. Is the blood runing to other most importants parts of her baody, leaving the stomach to the end, so sho can´t make the digestion to good? she drinks the firs to botles of 125ml just fin, the other of 100ml it gives work, and the others it´s almost imposible. she is reaching under 400ml at day, and she has to reach 600ml! last weeks she reach 500 and a little bit more, and she gain weigh, but this last days it got whorse. she is not tired or agitated, just don´t want it. she eats a little of yogur or pudin, but not to much. she looks good, very active and playfull. just don´t know whats´s going on.

[Willy]

You have to discuss this with the doctor.

You can do a little test and skip the carnitine to see if that is the problem

In heneral sick people are not very hungry. May be you had the flue once and fever, then you do not want to eat, nothing tastes any more.

So it could relate to her ilness.

Look for signs like loosing weight. If she stays the same or even gains a bit more weight I would not worry so much

But discuss this with your doctor also and ask what he thinks about this

[Aleta]

ok thanks!

[Willy]

Hello Aleta and Sebastian how are things going with Lara

Still problems with apetite?

[Aleta]

Hello! yes, still less apetitte and this week she gain no weigh. but we´ve discovered that, when we pass from carvedilol pills to carvedilol solution she started to not want to eat. make the calculations and the doctor who prescribe us the dosis did it wrong. for a week we were given lara 0,50 mg of carvedilol and she has to take 3mg. yesterday was the second day that she take the 3 mg again. I guess that week she didn´t take her dosis right, she had al little deficiency (tha doctor who cal to give us the right dosis said that for sure it´s not like that, but the pediatrician said yes, for sure had deficiency) and that´s why she didn´t eat to well an no weigh. we´ll see this week, yesterday was a little better.
next week check the heart, I hope nothing bad happened that week!!!

[Willy]

Excellent research

I do not believe there is a defciciency, but..............

Her condition can be worsening if she does not get the rigth amount of beta blocker

And sick children do not want to eat

So wait and see

[Willy]

next week check the heart, I hope nothing bad happened that week!!!

I would realy want to get a new BNP value although it os a little bit early for improvements

[Willy]

I advise 200 - 400 mg magnesium to an adult like me 70 kg

That means 2,9 - 5,7 mg / kg / day

Lara is at the moment around 8 kg tha dosis for her is

22,8 - 45,7 mg / day

So a dosis between 30 - 50 mg is fine per day. That means 2 x (15 - 25) mg because it is better to devide the daily doses.

The magnesium should be binded too an amino acid for optimal absorbtion (bio availability)

So for instance magnesium citrate is good

Sometimes doctors subscribe magnesium oxide. DO NOT USE THIS FORMULAE

This will not be absorbed

Magnesium sometimes gives diaree after a week or so. In that case you should take 50 % of the doses

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

Do not forget your home work it is time for magnesium now

[Aleta]

I´ll try to get the bnp test, but already told us that they don´t use too much that valui, just for children more sick than Lara. But we have a boubt, Lara in the las week started to sit on her own, it took just a few days to learn, and she has equilibrium and is very active and stron. Can be the q10 helping her muscles???

[Aleta]

about the magnesium we´ll see the metabolic doctor august 28, we´ll give her the information you give us.

[Willy]

Oke on the magnesium

If the BNP is not available it is not realy a problem

It was to early any way

I want a BNP after she is on the full protocol

The first thing what oy see with children is that they do more, so sitting up is a good sign although ALL children will sit up when it there "time" to do so