Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

OK, I will.I remember that Lara is having led magnesium than she should, but not sure,

[Corrij (therapeut)]

Hello Aleta,

I understand your fear, it isn`t easy, and as a mother you only want the best for your child.
Try to stay positive how hard this may be. If you give up hope you give up life.

Sometimes it takes a long period before we see some changes and sometimes this happen very quick.
Try to get the results of her pro-BNP so we have a guide line to see if there are improvements.

warmest regards,
Corrij

[Aleta]

Hi corrij, Lara had no changes for the first 3 or 4 month since diagnosis, the she had two appointments with improvment, not big but we got really happy, I even begin to think she was healing. Now this is a step back and I don´t know what to think.

In a while I´ll make the listo of echos and tests, and ask to may pediatrician the prescription to BNP.

[Willy]

Hello Corrij and Aleta I will update the forum with new software so it will be a short while not available and will change a bit in layout

[Willy]

Update finished

Aleta I hope you still have your English User Interface

[Aleta]

Yes I have the english interface!

have the prescription for pro-BNP, I´ll try to get the sample tomorrow but we got a long 4 weekend ahead, and I believe the results will be the next week.

I was wander what el can we give Lara to hel her to get better. She is already wit a lot of carnitine (900 mg) at day, and a lot of Q10 (150 mg) at day. I´m drawning in a glass of water here?

regards,

aleta.

[Willy]

We have to get pro-BNP value first before we go "running"

[Aleta]

I´ve lost the english interface

We took BNP sample, resultst will be march 31! In Argentina they do the test in the day in emergency centers, in a lab they take longer, and we have a long 4 weekend ahead, and the easter, in the lab told us that if the pediatrician call and ask for the results faster meybe they can do it, it´s 2 ours thing. Finger crossed.

scary moment here.

best regards

Aleta.

[Aleta]

Hi Willy and Corrij!

I´m sorry to take long in post the echo´s reports, is because it´s a lot to translate, but I´ll try to do it tonight or tomorrow.

I´ve call the lab to find if they can make the BNP test urgent, they gonna answer me tonight.

We are having a hard time to decide if Lara keeps the treatment with the same team of cardiologist. Everybody told us that the Dr is an eminence, but we are not confortable with them. It´s hard to get the information we need, I´ve ask last week how Lara´s Z score is going, because what we understand the measures of the heart are, remains the same since 9 months ago, and the rest of the heart we believe has grown, doctor didn´t answer me, just say that we must not look at the numbers.

Besides, the last echowas made with Lara sit, moving and crying, I guess they have a lot of experience and can measure her anyway, but I have a friend cardiologist who told me that if she is moving changes everything. So we have a lot of doubts.

We are not confortable but Lara needs to have the best treatment, so we are researching if there is another eminence in the country.

They raise up Enalapril almost the double, and Espironolactone a bit.

I´ll let you know if we get pro-bnp sooner that march 31, and I´ll post the report as soon as i can.

(I have the english interface again, are you receiving my posts?)


Best regards

Aleta.

[Willy]

I understand your reasons but I can not help you with advise on this matter

For a blood test it does not matter if Lara jumps up and down. The only problem is getting the needle in here arm.

So wil wait and see.

[Aleta]

Nop, that was with the echo, the echo was the test they did while she was moving and crying (and sit, not lay down).

[Corrij (therapeut)]

Hi Aleta,

Your right

Your child needs to lie still during the test so the test results will be accurate.
Most children do not need to do anything special to get ready for an echocardiogram. However, if your child is under three years old, he may need a sedative. A sedative is a kind of medicine that will help your child sleep for the test. An echocardiogram works best when the child does not move.

greetings,
Corrij

[Aleta]

Hi Corrij, at first they sedated Lara, but after a few echos she get used to it and was very still, the doctors just sing or play with her and she stays still. But last time it was another doctor and he told me to have her sit, and she was not happy at all.

Even so I stay with this numbers, but we can´t help have a little doubt.

[Aleta]

Willy and Corrij!

Maybe you can help us out on this one. If you don´t, is ok!

The measures that are the same since diagnosis are DDVI (diastolic dimention left ventricule) 35mm, and DSVI (sistolic dimention left ventricule) 26mm. Is that the measure of the dilated part of the heart?
Do you know how calculate the Z score? we don´t understand how if the measures are the same (1 or 2 mm less or more) in nine months and 4,5kg more, how the Z score did not change. Or changed but the team didn´t answer on that.

I´m sorry to ask, but there are things that we don´t understand about the reports and the team just don´t educate us about it. I don´t like to feel that way with Lara´s doctors they are tacking care of her, but we need to know some stuff.

hugs

Aleta.

[Aleta]

OK I got the BNP results

BNP- PEPTIDO NATRIURÉTICO TIPO B 429 pg/ml normal range 5-169

VITAMINA D 25 (OH) 64,5 ng/ml

Deficiency, less than 10

insuficient 10-29

enough 30-100

toxic mayor de 100


How bad is this?