Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

Thanks Corrij!

Now I feel safe giving her iron besides the food, because she still doesen´t eat to much solid food, but the milk is fortified with iron, has 0,91 mg per 100ml. She drinks around 550/600ml so that would be around 5,5 or so. I{ll ask the pediatrician if she thinks is necesary give her so much.

No just started to make a little noise of mocus, I´m a little worried. Maybe it´s nothing because she looks fine, but I´m very scared about the cardiology appointment tomorrow!!!

Difficult day!

Thanks a lot for the iron info!

[Corrij (therapeut)]

Hi Aleta,

When in doubt of what's going on, make a video of the breathing pattern that is worrying you to show to your baby's health care provider.

Breathing problems (such as noisy breathing) that only occur occasionally are normal. Worrisome breathing problems, on the other hand, are usually persistent.

However, when it comes to any breathing concerns, be sure to contact your pediatrician.

Good luck tomorrow,

greetings,
Corrij

[Willy]

I found this during a pubmed search

The negative effects of cow's-milk consumption seem to be limited to iron status up to 9 to 12 months; then no negative effects are observed, provided that cow's milk, up to a maximum daily intake of 500 mL, is adequately complemented with iron-enriched foods

http://www.ncbi.nlm.nih.gov/pubmed/21921812

[Aleta]

Hi Willy and Corrij.

I observe the fast breathing when she just fall sleep, after a while she breath very slowlu. But Last night I¨ve see her hear pumping! Sebastian sayd that when I´m worried I start to imagine things. I´m sure gonna talk about this today with the cardiologist.

If you have a question for her you are welcome.

Nothing else is calling my atention, she seems a normal 10 month child.

About the milk, Lara still doesen´t it large amounts of solid foods, and she is having formula, but doesen´t love it, I´ve prove it and it taste auful, so she is right, but is the trand that has less sodium of all, is Nutrilon 1. Even so, her taste for solid food is slowly growin, so I´m spect that in the next months she eats more and drink less formula. Last night she eat meet and seemed to like it, I also give her vegetables, eggs, yogurt, fruits and a lot of pudin witch has a lot of calories.

We have appointement at 4 PM, bed time for you, but I´ll post what they tell us and you can read it tomorrow.

I´m nervious like this was the first time, God!!! So stressful!!!

hugs to both of you.

Ale.

[Aleta]

Corrij and Willy!

We got the results from the lab on the way to cardiologist appointment:

BNP - PEPTIDO NATRIURETICO TIPO B 64 pg/ml 0.0 - 263.0

PCR CUANTITATIVA Menor de 0.9 mg/l Hasta 5.0

VITAMINA D 25 (OH) 70.0 ng/ml desirable: mayor de 30
insufficient: de 11 a 29
deficient: menor de 10

This is pretty good, right?

With cardiology:

EF went up to 29% (last time, one and a half month ago was 28%)

But the cardiologist who saw Lara was more exited about the mitral valve, last time the incufficient gradient was 80%, and now is 70%. These are numbers tha we never have been discussed, an we been following from a few reports back, that was in august 90%, 20 days later 85%, in october 80% and now 70%. The doctor told us that with that defficiency of mitral valve she would like to be with more than 30% EF. But when Lara gets an 60% of gradient defficiency of mitral valve, her condition will be moderate and not severe as theyr report now.

About the dilatation they said that the heart was not bigger and Lara is, witch is good.

They adjust medication because of weight gain, thing that scares me a little, but doc told me not to, because if her chief (who is actually the main Lara´s cardiologist) tells something, she´ll do with eyes closed because she have a lot of expierence. More Spironolactone (20mg at day) and Carvedilol (4mg at day).

Then we went to the car and compare the last report with the new one (as we always do), and we saw that some measures are different: now DDVI 30mm, DVSI 20mm. And the october report was DDVI 36mm, DVSI 26mm. We got "Her heart is smaller???"

I´ve back to the hospital, and the two doctors who atended us was gone and I´ve crossed with the chief, Lara´s Dr! I asked about this numbers, started to explain to me about the shape of the heart, and then she get tired of explain and told: "she is the same, don´t watch the numbers", I´ve told her about the mitral valve that the other doc told us that is better and again "is all the same, she is growing and that is very important, have faith".

SOOOOOO, she is better or the same???? After a long explaining about the mitral valve, and that the medication is doing the job, etc etc, the other doc tells that is the same? Is she especting to see a big change to pronounce the word "better"?
Also didn´t give importance to the drop of BNP...

What we can see in the numbers and in her, is that she is better, so, thank you so much, because we believe you have a great part in this!!!

We hope she keeps improving!

THANKS YOU SO VERY MUCH!!!

Aleta and Sebastian.

[Corrij (therapeut)]

Hi Aleta,

BNP from 2300 to 263 is a big improvement
A brain natriuretic peptide (BNP) test measures the amount of the BNP hormone in your blood. BNP is made by your heart and shows how well your heart is working. Normally, only a low amount of BNP is found in your blood. But if your heart has to work harder than usual over a long period of time, such as from heart failure, the heart releases more BNP, increasing the blood level of BNP. The BNP level may drop when treatment for heart failure is working.

The BNP level may get lower if treatment for heart failure is working.

greetings,
Corrij

[Willy]

BNP - PEPTIDO NATRIURETICO TIPO B 64 pg/ml 0.0 - 263.0

Is here pro-BNP 64?

Aleta you are able to panic even in the face of victory

Lara is getting better. You have to get used to this

What always happens, and I told this several times is

Patients feel better, eat better, then blood values improve, then EJF improves, then heart size improves

Lara is following this path.

STOP with what you do Aleta. It is making your life misarable. Look at your doughter and enjoy life the same way she does

[Aleta]

Corrij and Willy! pro BNP resulst are 64, 0-263 are the reference values, so I believe she is in the normal range.

Willy: "Aleta you are able to panic even in the face of victory", in this few months you´ve learned to read me like map, ha ha, you´ve made me laugh! Don´t get mad at me
BUT this is not the case, I´m happy and a lot more relaxed.

I can see that she is better! When I said "is she better or not?" was not in panic, the tone was more of
indignation. Our cardiologist don´t let us go back home happy almost never, even when Lara is better!
Don´t get me wrong, she is a great doctor, knows a lot, and she saw us for the first time only one day after we left the ICU, I know she cares about Lara, and Sebastian and I are very grateful for that. But she has a way to say things, that even when Lara is getting better, say a little thing that keep us down. We have to decode what she says and Lara´s results. It´s like she doesen´t wants to us be exited. The other time when Lara went from 29% to 28% EJ, we were very happy and she told us "it a liiiiiitle better, but in general is the same", and we know that she improved a lot!

It´s frustraiting talk to her, is not just me, Sebastian thinks the same!

So, my expression last night was not panic, was indignation! Even so, I´m very happy!

And very grateful to you both, I than the universe to have found Saskia, and then you.

I forgot to tell you about the fast breathing, they told us that if is not all the time, we should not to worry, but keep an eye on that.

Vitamin D results are ok? we keep given Lara the soft gel?


Cheers for Lara! yey!

[Aleta]

I´ve write wron before, "The other time when Lara went from 29% to 28% EJ, we were very happy and she told us "it a liiiiiitle better, but in general is the same", and we know that she improved a lot!" I´ve ment 20% to 28%.

[Willy]

I had to say this to you: "Aleta you are able to panic even in the face of victory" but I am not mad

VITAMINA D 25 (OH) 70.0 ng/ml desirable: mayor de 30
insufficient: de 11 a 29
deficient: menor de 10

We use nmol/l in The Netherlands with a reference range 50 - 150

in Argentina they use ng/ml . But it is not clear for me what the reference range is for this value

Can you explain this

[Aleta]

So happy that you are not mad!

The reference here is 30-150 of vitamin D, remember? There is 50-150 so is better she gets higher than 50!

I belive this are measures that this particular Lab has.

Desireble value, more than 30- Insufficient value, from 11 to 29- deficient value, less than 10.

Lara´s result is 70.

[Willy]

Execellent it will be summer in Argentina so we will go aproximately to 100 - 110 fine

Try to get this vitamin D blood test also the next time when they test Lara again

[Aleta]

ok! great! we keep given the vitamin D of now foods?

[Willy]

What is the dosis?

[Aleta]

1000 U.I. at day