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

Bericht door Aleta » zo dec 27, 2015 12:01 am

Hi Corrij and Willy!

First of all, merry chritsmas! I know it was yesterday but is getting hard to focus in this days!

I hope you had a wonderfull time.

We not so much, on tuesday we went to cardio check up, Lara's SF is %26, measures a little less mm, but still Lara's heart is taking real shape and used to her good working valve. She has some fluid in the pericardium, which doc told us that is normal after surgery, that would explain why lara is having shortness of breath since twoo days before the check up. Doc increase furosemide and prescribe ibuprofen every 8 hours, and check up today.

But in the middle, Lara started a cold, on chritsmas eve she had a little little fever, so that night she was agitated, upset, sweaty, and yesterday she was better but she made much more less pee. So, we went to ER, and turned out everything was ok, is just a cold and today is much better, the pediatrician called our cardiologist, and we went home. what she sweats is what is not making pee. Is what we thought, but in a surgery recovery, we prefer to make sure.

Today we had the check up with cardio, with her sister who is a cardiologist too, and numbers are the same, and the fluid is less :)
She add carvedilol every 12 hours (after surgery lara still didn't have carvedilol) and they think that will help with sweat and of course heart rate (it was 100/110 day ago and this last days was 135, maybe for the cold?)

We have to come back on tuesday for another check, I still don,t know if they are checking so often for surgery or fuid or both. I feel a lot safer this way, but a little tired.

Lara is an amazing little lady, and I think I was underestimating her. She is my hero.

So, that's the news!

I hope you are having an easy time, this are the most emotional unestable holidays.

Hugs (the big ones)

Aleta.

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » ma dec 28, 2015 9:51 pm

Hi Aleta,

Thanks for the update :D
I think its normal to check so often, it was a a heart surgery and its a little girl.
A very strong little girl but its better to check her regular.
Maybe its a option to give her echinacea to give her immune systym a boost.

A big hug for both of you,

Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

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

Bericht door Aleta » ma dec 28, 2015 10:23 pm

Hi!

What is echinacea?

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » ma dec 28, 2015 10:40 pm

Hi Aleta,

Its homeopathic but i was to quick, its better not giving under the age of 12.

The best supplements to boost a child’s immune system are vitamin D and zinc. The herbs elderberry and astragalus are my favorites for recurrent respiratory tract infections,

Corrij
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will not have good health for enough time.

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

Bericht door Willy » wo jan 06, 2016 3:46 pm

Hello everybody

Happy new yoear

Maybe we can optimize the vitamin D3 status. Do you know here latest blood value?
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 » wo jan 06, 2016 4:47 pm

Hi willy and Corrij, happy new year.

We have not tested Lara's D3 since a while ago.

Last week cardiologist send a bloodwork and everything was great (but no D3 tested).

We had pediatrician two days ago, and cardio check up yesterday.
Lara is doing fine, she gained weigh, like 800mg since surgery, she reached 11kg.
Ped was very happy with Lara's recovery.

At cardio, the fluid in the heart is gone, some inflammation still, so ibuprofen once a day. Sf is %26-28, a liiiiitle better (was %26 last time) . still a little shortness of breath but her heart must get used to handle less blood, so she is gonna be a little longer like this.
Doc expectations are that with no reflux from the valve and less blood, the heart will start to improve from cm, but it's gonna take some time. So far so good.

I believe maybe we have to adjust supplement dose because of gained weigh, but I can't find the calculations we always do... :(

I feel grateful

Cheers

Aleta.

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

Bericht door Aleta » di feb 02, 2016 4:56 am

Willy schreef:magnesium dose adult of 70 kg 200 - 400mg Lara --> 29 - 58 mg per day

ribose adult 70 kg: 15 gram Lara --> 2,16 gram per day

I hope you made a mistake with your ribose dosis you wrote 3 x 3mg, Do you mean 3 x 3 grams?

If so you can reduce it to 3 x 1 gram per day

Hi Willy and Corrij!

I was looking for the magnesium dose for Lara because she gained weigh, is almost 11,500 kg I believe...
And I found this, it saids that Lara should be 58mg per day, I think when we talk that day Lara was around 10kg.
So, I been giving her ONE ENTIRE gigsaw tablet (one half in the morning, and one half at noon), it means 125mg, is the double of what you suggested and we made a mistake???

I believe we have to adjust supplements dose but I'm not sure which is the post, and I lost the charts in the old computer :(

:o :o :o :o :o :o :o

We are going often to check up Lara to cardio, her heart is tha same size as usual but she is getting bigger, she will have a Z score in a few months, and her shortening fraction is %28!
She feels great.

The report now says: mitral valve, sistolyc and distolic function defficiency: MILD (for now, no longer moderate or sever, and I pray that this just gets better). If Lara keeps this way, next year she can attend to kindergarden!!!

This Is a big part thanks to you, I'm very grateful and I think about you every day, I hope you both are doing great!

Next appointment is on feb 18. This is still scary but she is doing very good :)

Best and warms regards!

Aleta.

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » wo feb 03, 2016 8:11 pm

Hi Aleta,

The dose magnesium is to much.
My calculation says 65 mg a day.

So one half is enough.

I`m glad to read she`s doing great :D

regards,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

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

Bericht door Aleta » wo feb 03, 2016 10:12 pm

Hi Corrij!

But if she is doing fine with 125mg, do you think we should decrease the dose?
She started with 1/3 of gigsaw tablet, and we increased to 1/2, but i don't remember what
Calculation we made...

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » wo feb 03, 2016 10:42 pm

Hi Aleta,

125 mg is to much!
a adult takes at least 400 mg a day!
So please decrease the dose,

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

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

Bericht door Aleta » do feb 04, 2016 12:32 am

Ok i will, now I'm scared!

I divide 68mg in two dosis or can i give her 68mg at once?

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » do feb 04, 2016 10:07 am

Don`t be scared.
Its better to give her two times a day 35 mg.
So 1 x 35 mg in the morning and 1 x 35 mg later on the day,

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

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

Bericht door Willy » vr feb 05, 2016 3:06 pm

Too much magnesium will cause diaree

That will make here intestines less efficient absorbing. nutrients
Met vriendelijke groeten,

Willy Witsel

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

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

Bericht door Willy » di feb 16, 2016 10:50 am

How are things going with Lara
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 » wo feb 17, 2016 1:41 am

Hi willy!

Lara looks great, today i took her to pediatritian to know her actual weight because in to days we have cardio check up. She weighs 11,450 kg, almost 1kg after surgery! I hope her heart looks good too!
We' been crazy making small pieces of magnesium to get 70mg, and today i remember that we used to give her 1/3 if tablet twice at day, that would be around 80mg at day. It' ok for her?
I'll be checking in after cardio appointment.

I hope you are great!

Cheers,

Aleta.

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