Baby girl, dilated miocardyopathy from Argentina, need help

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » za dec 16, 2017 3:09 pm

Aleta, Irna needs some help and get her priorities right

viewtopic.php?f=65&t=11678&p=98013#p98013

please help her
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Willy Witsel

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Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » za dec 16, 2017 6:15 pm

Why Vitamin D?

See meta analyses https://www.ncbi.nlm.nih.gov/pubmed/26415519
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Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » zo dec 17, 2017 4:27 am

Ok, so with that calculation I have to give her 2,94gr at day, we are still ok :)

It's been a while since we don't do a vitamine D dosage, do you want me to ask for it in the next blood work we have to do?

Best regards

Aleta.

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » ma dec 18, 2017 6:23 pm

Aleta schreef:Ok, so with that calculation I have to give her 2,94gr at day, we are still ok :)

It's been a while since we don't do a vitamine D dosage, do you want me to ask for it in the next blood work we have to do?

Best regards

Aleta.
Yes
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Willy Witsel

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Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » ma dec 18, 2017 6:26 pm

Ok, so with that calculation I have to give her 2,94gr at day, we are still ok
3 gram is oke per day
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Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » do jan 18, 2018 6:45 am

Hi Willy, I hope you're doing well.

I Don't know how to paste an image here so I'll email you.
The picture is an X ray of Lara's hands. She has a weird bone in her wrist, so I took her to a traumatologist and she orderes an x ray.
The thing is that a part of the ulna bone in misisng and one of the little ones, de scaphoid bone is not there. The doctor thinks that this could be a sequel of an infection and that we have to follow her and see how that bone grows.
I asked to our ardiologist if this could be the infection that might caused the miocarditis and she said that no.
To you think that this might be related to her heart in some way?

I'm terrebly worried, because this could mean a surgery in the future, I pray not.

Jan 22 we have pediatrician appointment, 23 LARA'S 4 BIRTHDAY! and 29 Cardiologist check up (fraking out already)

Best regards.

Aleta.

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » wo jan 31, 2018 5:14 pm

Hi Willy!

We had our pediatrician and cardiologist check up.
Ped researched about Lara's hand (the missing bone) and it has naothing to do with DCM. We have to follow the develepment of the bone, but for now is nothing serious.
Lara's weight is still 14kg but she grew 3 cm in four months, so everything is ok.

Cardiologist:
Lara's function and heart size are the same as last time (but Lara is bigger), so doc told us to stop Carvedilol. Seh was having 3,125mg at day, half in the morning and half at night. We stoped tha night half, and in one month the other half. Back in 3 months.
So, heart meds, only Enalapril. This is very happy and scary at the same time!

Besides this, it happened something crazy... I still having rehab for my arm, and i've met in the office a children heart surgeo, it turns out he is the chief of the first cardiologist that Lara has. We talked about Lara and he said that probably she born with a mitral valve desease which led to miocarditis, and that is why after the mitral valve surgery she got so good. So tha main desease would be the valve and not DCM. Of cours this is something he told without looking an acho or see her, but he was going to check Lara's history. In case he tells me something new, I'm gonna talk about this to our cardiologist to see what she thinks. He knows her and the surgeon who made the valve surgery of Lara, Everyone knows each other! So crazy, I'll let you know if I know something more.

Lara turned FOUR years last week, can you believe it??? I'll never stop to thank you!

Best and warm regards,

Aleta.

Tinus1979
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Tinus1979 » do mar 01, 2018 4:51 pm

Hi Aletta,

A while ago I've Read your story. Great to see Lara had made so many progress. Our son Finn has also dilated cardiomyopathy and a strange looking mitral valve. Can you tell me what the problem was with Lara her mitral valve and what kind of surgery she had?
Thank you!

Martine

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » do mar 01, 2018 5:12 pm

So, heart meds, only Enalapril. This is very happy and scary at the same time!
missed your message. but docters do not reduce meds without good reasons

I suggest with this news to not correct the sups for here increase in weight

If he is right and Lara needed "a plumber" to correct her valve then the cause of DCM disapesred and we only have tot support her heart

Let me know if they are sure about this!
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
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Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » do mar 01, 2018 5:14 pm

I slowely come out of my depression, so I do not sit behind the computer so often any more

More outside, at the moment -8 C temperature
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » do mar 01, 2018 5:40 pm

Willy, I'm so sorry to read that you still have depression issues. I hope you can get out of that soon! you are a great man and you deserve it!

Is today the first day Lara doesn't have her carvedilol dose. Soooo scary, and today she starts her second year in preschool!

We have cardio check up in april 30, I'll let you know how it goes and what she says about this doctor's theory about mitral valve.

We'll leave the supplements like this as you suggest.

I hope depression goes out with the winter, and spring brings you joy.

Warm regards,

Aleta.

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » do mar 01, 2018 5:51 pm

Tinus1979 schreef:Hi Aletta,

A while ago I've Read your story. Great to see Lara had made so many progress. Our son Finn has also dilated cardiomyopathy and a strange looking mitral valve. Can you tell me what the problem was with Lara her mitral valve and what kind of surgery she had?
Thank you!

Martine
Hi! I didn't read your mesage before, I'm so sorry!

Lara had her mitral valve ring bigger than usual and that caused regurgitation. As her left ventricule got better, the valve not. at one point, in dec 2015 (she was diagnosed in june 2014 at four months old) the ring was too big and she had a mitral valve repair surgery. Thay use her own tissue to make the repair, that was get smaller the mitral ring.At the surgery time, the function was almost at normal range buat the heart was starting to get bigger because the effort the heart was doing with all the blood coming and going of that big ring.
Once the ring had a normal siza, Lara started to improve in function and not getting a bigger LV
Now we have to wait that she keeps growing but not her LV, and her funtion stays at normal range.

If you have any question you can write anytime.

I hope Finn is doing great.

Best regards.

Aleta.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » za mar 03, 2018 10:16 pm

Thank you for your help Aleta
Met vriendelijke groeten,

Willy Witsel

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Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » za mar 03, 2018 10:28 pm

Anytime!

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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » za mar 17, 2018 11:34 am

:D
Met vriendelijke groeten,

Willy Witsel

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