Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

What doctors says to us, is if Lara is in between 50/150 ng/ml she is fine. As you have other references we'll try to find somebody specialized in this.

[Aleta]

Hi Willy and Corrij, I hope you´ve had a wonderful crhismas!

Since Crhismas in Argentina we had holidays, today and tomorrow are business days and then again no work until next monday. That is why it took it so long to find out about ranges of vitamine D.

We´ll try to do it in this two days...

Everything is fine here, Lara looks good, she sweats a liiiiitle when she drinks her botlle, but I can´t tell if is no the auful hot summer that is hiting BA.

I´m kind of sensitive about the chrismas time nothing serious, just a comment, don´t worry!

cheers!

Ale.

[Corrij (therapeut)]

Hi Aleta,

Thanks for your little update

I had indeed a very nice christmas time.
my best wishes to all of you, and i hope that 2015 brings you good health, lots of luck, just a great year

greetings,
Corrij

[Aleta]

I wanted to ask you something that is scaring me in this days... can something sudden happen to Lara? Or that would be weird?

[Corrij (therapeut)]

Hi Aleta,

What do you mean by sudden happen?

[Corrij (therapeut)]

Is there something chance in the past few days?

[Aleta]

No, I´ve noticed that when she moves a lot, has a little bit quick, but just sometimes, and is a little sweat at drink her bottle (I give her the bottle, so she is in my arms and I give her heat), And is summer, so I really don´t know. It kind of worry me, but is so small that I even called the pediatrician, I look her very close and other people don´t noticed that.

The sudden thing is; she can have a heart attack, have decompensation, or even die suddenly? Or this illness is more predictable?

The protocol is taking care of nothing happens?

She is fine and more and more active, is almost walking, gets every place she wants to by her own and is very smart, so, no alerts, just me thinking and scaring me, as I said, I´m to sensitive in this days, I wonder if she will be here next Chistmas

[Aleta]

I also noticed that kids with LVNC/DCM are on aspirine to prevent clots, and Lara don´t. I don´t know why is that.

[Aleta]

I'm sorry, I meant that when she moves a lot her breath is a little faster for a few seconds.

[Willy]

Some heart failure patients get blood thinners. Most of the time because they have arithmias

Drugs have side effects, so doctors are not precribing drugs if the side effects are more then the complaints.

Bring this up by your next consult. Then you will get a professional answer

We had in the past some kids on blood thinners but they were all very ill! Lara on the other hand is not very ill and improving.

Have a nice New Year

[Aleta]

ok, I´ve asked if Lara had arithmias and she doesen´t. it must be that. But I´ll ask about aspirine anyway. Thanks!

Have a happy new year too!!! (you must know that you save me from insanity to many times, thanks for that, and I have no words to thanks for care about Lara.)

[Corrij (therapeut)]

Hi Aleta,

it’s normal to feel scared.

Contrary to how it sounds, heart failure does not mean that her heart has stopped beating. It refers to a number of conditions that can affect the way the heart works and/or its structure. Over time, heart failure makes it harder and harder for the heart to pump enough blood and oxygen to meet her body’s needs. That’s why most people with heart failure get short of breath, especially when they are active. Even climbing the stairs or carrying groceries may leave you winded.

To lessen your fears, start by getting correct and complete information. Tell your healthcare professionals about your fears. Ask them what you can expect over the next few days, the next month and the next year.

Use "positive self-talk" to help overcome your fears. For example, say to yourself, "Most people recover and she will, too," Or, "Most of my worst fears never come to pass.
Don't be afraid to talk about your fears with a close friend or family member. When you voice your fears, you open the door to getting help and information that can make you feel better.

greetings,
Corrij

[Willy]

I agree completely with Corrij

And stop thinking and start listening to what Lara tells you

[Aleta]

Thank you Corrij and Willy!

We are a little bit worry about short of breath, is a little and just sometimes, but is new and we are alert. We've call the pediatrician, she told us that maybe Lara is overcoming for a few seconds or maybe is nothing. We have to keep an aye on Lara and call her in a few days. We wander if she is not getting worse... The rest of stuff is just normal, let's hope she don't start to develop symptoms!

Have a great new year!

Greetings

Aleta & Sebastian.

[Willy]

Lara is using a beta blocker, that restricts here heart in beats / second. She is now feeling better but is restricted by the drug. That could explain getting out of breath during the first seconds of more exercise. Other heart failure patients also get these symptoms. Normally out of breath condition disapearce after 1 - 2 minutes when here heart adapts to the oxigen requiremnts