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

Geplaatst: wo sep 16, 2015 4:38 pm
door Aleta
Thank you so much Corrij!

I always ask mysefl about interactions of supplements and if I´m giving her in a right way...

1 gr Ribose goes with 100 mg ubiquinol at morning (long with carvedilol, enalapril, spironolactone, fursemide)

at 12, 500mg carnitine and 30mg magnesium

Before lunch 50mg ubiquinol

17 pm 1 gr robose with carvedilol, fursemide, iron, supradyn, D3 two days at week

21 pm 500mg carnitine, 30mg ribose, enalapril

at midnight 1 gr ribose with cardelilol and fursemide


It´s ok this way?

I hope you are doing well :)

Aleta.

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

Geplaatst: wo sep 16, 2015 8:12 pm
door Corrij (therapeut)
Hi Aleta,

Excellent, your doing great :wink:

greetings,
Corrij

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

Geplaatst: do sep 24, 2015 10:33 pm
door Aleta
Hi Willy and Corrij!

We came back from Lara´s checkup. Lara is clinically fine, no more shortness of breath, HR has slowed down and now is normal.
But numbers of atrium and ventricule are 3 or 4mm higher, which -doctor said- is expected when HR slows down because there is more fluid in the heart, besides, last check up Lara was with flu and diaree, and she was a little close to be deshidrated, and that takes out fluid from the heart and looks smaller.

So, Lara is very stable, Doctor is no worried about those numbers, also 27-28 SF since the last two checkups, the ones before was 26-28.

BUT what does worry her is the miitral valve defficiency...
If the ventricule were better, maybe she would do a mitral repair/replace surgery.
If Lara get worse, we´ll have to think about that surgery, and if gets better maybe we must too, but now is risky because in the recovery the ventricule first get worse, and after that in theory gets better.

That valve is stopping her improvement almost for sure.

But is a mistery if Lara is gonna get better from the ventricule and atrium and after that the valve, or first the valve, or never the valve. We have to keep waiting.

As Dr found Lara fine, she didn´t encrease Carvedilol, besides, has a little low BP and that would get downer.

I feel sad, we spected to see a little improvement.

Do you still think protocol is working? It can act on mitral valve too?

Change carnitine was a good move and we have to keep waiting?

So scared for my little girl!

Send you lots of hugs.

Aleta.

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

Geplaatst: do okt 01, 2015 8:39 am
door Aleta
Hi! Everything ok in Holland? I don´t know about you for a while...
I hope everything´s ok

Aleta.

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

Geplaatst: ma nov 09, 2015 11:01 am
door Corrij (therapeut)
Hi Aleta,

Everything is ok :D

How is Lara doing?

greetings,
Corrij

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

Geplaatst: di nov 10, 2015 6:52 am
door Aleta
Hi Corrij!

Everything is going fine here. A little cold here and there because of changing season, but nothing to bad. But when Lara has mocus she becomes a little little little agitated.
Even so, she seems to doing great. She had a big flu a month and a half ago and lost some weigh, but she gained back and even some more. She is a strong little lady.
Don't stop moving and talking. She amaze me!

But.... Next week is cardio check up, so panic week ha began for mom... Not that panic like other times, but this is our first check in two months, never that long between checks since we change Dr. And I know myself to well to say that panic and stress will increase.

The thing that calms me is see Lara that much happy and strong.

I believe that protocol is giving her strength, so I am very grateful to you.

I hope you and willy are doing great.

Cheers,

Aleta.

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

Geplaatst: di nov 10, 2015 5:55 pm
door Willy
Corrij and Aleta, my health is still a problem :evil:

So please Corrij assist Aleta and Lara with the supplements

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

Geplaatst: di nov 10, 2015 6:07 pm
door Aleta
Willy, I'm so sorry to read that.

If there is anything we can do for you, please let us know.

Maybe we could help you as you help us :)

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

Geplaatst: do nov 12, 2015 3:41 pm
door Corrij (therapeut)
Hi Aleta,

Don`t panic :) Lara is doing great and she`s looking good. Have a little faith.
Lets wait and see what the cardiologist say.

greetings,
Corrij

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

Geplaatst: do nov 12, 2015 4:07 pm
door Aleta
Yes I know, but she is almost always with a little fast breathing, but she is almost always with mocus, and she gets fast breathing because of that.

But I don't like it and is scary :(

I am having more faith :)

Aleta.

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

Geplaatst: do nov 19, 2015 9:09 pm
door Corrij (therapeut)
Hi Aleta,

Have you visit the cardiologist for the check up?

greetings,
Corrij

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

Geplaatst: do nov 19, 2015 10:51 pm
door Aleta
Hi Corrij!

Yes we had check up appointment.

As you and willy predicted, SF has improved :) now is %28-30, the lowest of normal.

The bad part of that is, as the ventricle is working better, the mitral valve works harder and got worse. So valve is stopping atrium to get better and smaller is the guess. She has severe mitral valve deficiency :(

We have to come back in 20 days to see how she is doing and what direction her heart goes. But is almost sure that Lara will have a mitral valve surgery in order to close the mitral ring. I guess January.

Doctor increase enalapril to see if that helps and fursemide for the weigh gained.

Besides that she is growing very well, cardiologist was happy about it. She said that I shouldn't leave thinking Lara is worse because she is not.
The thing is Lara breath faster and a heart surgery is very scary.
But has better prognosis with a good working valve, so I hope everything goes good.

So so scared.

I hope you are doing well and willy is better.

Regards

Aleta.

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

Geplaatst: vr nov 20, 2015 6:19 pm
door Corrij (therapeut)
Hello Aleta,

Its very normal to be scared if your child needs surgery.
I also believe that her prognosis is much better whith a good working mitral valve.
She`s doing great and she`s having a great mom :D

Keep faith!

greetings,
Corrij

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

Geplaatst: vr nov 20, 2015 8:18 pm
door sasje1903
Hi Willie & Corry

Aleta asked me to update you...

She just send me this message...
---
Cardio called us, she talked to the sergeoun and they said Lara should. Have surgery next week or one after. We are going to clinic to make pre surgery tests. I'm going nuts.
--

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

Geplaatst: vr nov 20, 2015 9:19 pm
door Corrij (therapeut)
Hello Aleta and sasje,

My thoughts are with you and Lara.
Have faith, she is a strong little lady!

I know this is very very scary but she needs this operation, keep us informed,

lots of love and a big hug,

Corrij