Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

The results just came:

pro-BNP PEPTIDO NATRIURÉTICO 731,0 pg/ml 5,0-169,0

Método: Quimioluminiscencia

I don´t know why they did "proBNP" instead just "BNP" as the prescription said. I don´t know how to compare with the last results.
Anyhow, is high

I don´t gonna lose the hope, but is getting hard!

Have a good day.

Aleta.

[Corrij (therapeut)]

Hi Aleta,

The most important use of natriuretic peptides is in helping to establish the diagnosis of heart failure (HF) in a patient in the urgent care setting in whom the diagnosis is uncertain.

The reference values of brain-type natriuretic peptide (BNP) and N-terminal (NT) proBNP are different to exclude or confirm a diagnosis of heart failure. These values also depend on age and gender and are higher in elderly persons and women.

In cardiology, B-type natriuretic peptide and the amino terminal segment of its prohormone (NT-proBNP) are important biomarkers. The importance of these peptides as markers for heart disease in pediatric cardiology is reviewed. The peptide levels are dependent on age, assay, and possibly gender. The normal value range and upper limits for infants and children are needed. To determine reference values, data were combined from four studies that measured NT-proBNP levels in normal infants and children using the same electrochemiluminescence assay. The age intervals for the upper limits of normal were chosen for intervals in which no age-dependent change was observed. Statistical analysis was performed on log-transformed data. A total of 690 subjects (47% males) ages birth to 18 years were included in the review. The levels of NT-proBNP were highest in the first days of life, then showed a marked decline in the first week or weeks. The peptide levels continued to decline gradually with age (r = 0.43; p < 0.001). Male and female levels differed only for children ages 10 to 14 years. However, the upper limit of normal did not differ between the boys and girls in any age group. The findings lead to the conclusion that B-type natriuretic peptide (BNP) and NT-proBNP are important markers for heart disease in pediatric cardiology. The levels of NT-proBNP are highest in the first days of life and decrease drastically thereafter. A mild gradual decline occurs with age throughout childhood. Girls have somewhat higher levels of NT-proBNP during puberty.

Reference Range Changes for NT-PROBNP Assay

Effective Wednesday, February 1, 2012, the University of Iowa Hospitals and Clinics (UIHC) core laboratory will change the reference ranges for plasma "NT-PROBNP (N-Terminal Pro-B-type Natriuretic Peptide)" (EPIC #LAB649). These changes add pediatric reference ranges and also more detailed age-related reference ranges throughout adult years.

Age Reference range (pg/mL)
Pediatric (boys and girls)
0-30 days 263 – 6500
1 month -11 months 37 – 1000
12 months – 35 months 39 – 675
3 years to 6 years 23 – 327
7 years to 14 years 10 – 242
15 years to 18 years 6 – 207

The pediatric reference ranges are from a published study of NT-PRO-BNP in infants and children (Nir A et al. Pediatr Cardiol 30:3-8, 2009). Keep in mind that the interpretation of NT-PRO-BNP in infants is challenging due to very high values in neonates that decline rapidly within the first month of life. There is also very little data on NT-PRO-BNP plasma concentrations in premature infants.

Her BNP was in august 2014 2300 PG/ML
Her Pro-BNP in august 2015 731 PG/ML

greetings,
Corrij

[Aleta]

August 2014 2300
Dec 2014. 64
March 2015. 429
August 2015. 731


This predict something? You think protocol is not working for her?

[Corrij (therapeut)]

Aleta aleta,

These values don`t say much, because some are BNP and others are Pro-BNP.
Her Pro-BNP is at this moment 731 the reference normal for her age is 39-675 so her 731 isn`t so bad.The protocol is working! If you look at her do you see a improvement in the last year?
Fear is a bad advisor!

Reference values are dependent on many factors, including patient age, sex, sample population, and test method, and numeric test results can have different meanings in different labs.

BNP and NT‐proBNP plasma concentrations are expressed in pg/ml or pmol/l. The conversion factor for BNP is 1 pg/ml  =  0.289 pmol/l, and for NT‐proBNP it is 1 pg/ml  =  0.118 pmol/l. BNP values obtained with various assays are not comparable and there is no conversion factor for the comparison of BNP and NT‐proBNP values.

Role of BNP and NT‐proBNP in clinical routine: key points

B‐type natriuretic peptide (BNP) and NT‐proBNP are reliable biomarkers, reflecting myocardial stress caused by various cardiovascular diseases
Both markers are stable in whole blood and can be measured in clinical routine using fully automated commercially available assays
The diagnostic performance of BNP and NT‐proBNP is comparable and there is no meaningful difference between the two
The particular strength of BNP and NT‐proBNP is to rule out heart failure in patients with shortness of breath in the emergency department
Both markers provide prognostic information in patients with heart failure, coronary artery disease, and valvular heart disease,

greetings,
Corrij

[Aleta]

OK, I´m a little relieve.

Thanks!

Shoud we start with ubiquinol now? I guess we´ll have it tomorrow.

We agree with willy to give her 150 mg.

Going to take bood for genetic now is auful si my baby pin

hugs

Aleta.

[Corrij (therapeut)]

hi,

Yes you can start the ubiquinol
Stay calm and focus,

greetings,
Corrij, and a big hug for you also your a great mom

[Aleta]

Hi again!

We made the blood test for genetics, is a panel of 43 genes, and the sample will travel to Spain. The results will be in 10 weeks.

Our lovely cardiologist called me, she said that she knew that BNP was gonna be high, even we can´t compare with the oldest, because this is proBNP and the others BNP, is high. She didn´t though that this was gonna be a good moment to see BNP because we are increasing and switching dosis and Lara is not yet in the optimal dosis, and asked for BNP so you can have the numbers before switching to Ubiquinol. She would repeat it 6 month from here.
But, for her it turns out useful to see numbers because, she explained that could be variations in proBNP (which is more sensitive than BNP) because of bad function of mitral valve and atrium. She wants to keep a close eye to the valve, because she suspect that the mitral valve is bottering Lara´s improvement. The atrium is bigger than the ventricule ant that is because of the valve. BUT the cardiomiopathy came first, and after mitral valve deficiency, because takes a lot of years for a valve deficiency to get a heart dilated.
She wants to wait 6 months-1 year, and if Lara keeps this way or get any worse, have a meeting with the surgeon of the team and evaluate the possibility of a valve repair surgery. (I HOPE THIS WONT BE NESSESARY). The surgery would be risky with the ventricule like this. She thinks is better to wait.

Since last October, the numbers of the ventricule are more or less the same, she said this is great because Lara is growing and the ventricule don´t
Because of that she wants to follow the mitral val and atrium. We don´t have numbers of that because the former cardiologist didn´t put it in any report, or Lara´s history (!!!!), so, we don´t know the evolution atrium has made, that is way she is in watch and wait mode.

Do you think tha protocol can work on the atrium?

I´m mentaly exausted. it´s 14:50 here and have a lot of work. I would love to take a nap with Lara (is what she is doing now)

Ubiquinol: I give her all the 150 mg at night, or 100mg at mornig and 50mg at night?

Thank you for be there and help us, it mean so much!

I hope willy is ok, I´ve didn´t heard of him, and Corrij I really hope you are doing better and send you a big hug! You are wonderful people.

Cheers

Ale.

[Corrij (therapeut)]

Hi Aleta,

I think Willy has a lot of work to do after his holiday, I am sure he read all your messages
Your cardiologist is right, wait and see what happen.
The protocol has improved her ventricule and and it is often the case that when the hart gets smaller the mitral valve is getting less.

The mitral valve is between the heart's left atrium and left ventricle. It has two flaps that open and close together like a pair of swinging doors. When the heart beats, the left ventricle pumps blood out to the body and the flaps swing shut. This keeps the blood in the ventricle from going back into the left atrium.

Don`t give her the ubiquinol at night, it gives her energy and so it can give her sleeping problems.

greetings,
Corrij

[Aleta]

Thank you for always be so clear explainig

I give her the Ubiquinol at mornig with the breakfast all the 150mg?

[Corrij (therapeut)]

Hi,

Can you give the 150 mg in two times?
For example some in the morning and some in the afternoon?

[Aleta]

yes, we brought caps of 100mg and 50mg, Is a good idea give 100mg with breakfast and 50 with a afternoon snack?

[Corrij (therapeut)]

Hi Aleta,

Yes that is better

[Aleta]

Thanks! Have a good night

[Aleta]

Hi Willy and Corrij!

I wanted to tell you, for your records, that Lara started yesterday (August 12) Ubiquinol

Is there any problem if I give her afternoon take, with the supradyn? At that hour she takes Iron, Ribose, Supradyn, Carvedilol, Fursemide, and two times at week vitamine D3. Can I include Ubiquinol with that?

Yesterday we also saw our pediatrician, she was very happy with Lara´s grown. She weighs 10,100 kg and is 83 tall!!! I´m so happy!!!
Her heart is slower than before and she didn´t heard the fast breathing this time

That´s the news from BA!

Cheers!

Ale.

[Willy]

I am on holiday with cora and my grandchildren, but I missed the notification email

I read all the messages I missed. You can not compare BNP en proBNP values,

So the only thing you can say is what Corrij already wrote, current value a little bit above reference for here age

Starting the new Q10 is good, dosis also

So I am still joining the club, the only thing is that I missed a notification email