Baby girl, dilated miocardyopathy from Argentina, need help

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

Berichtdoor Aleta » Di Jan 31, 2017 5:15 pm

Hi Willy!

I hope you are doing great.

We had Lara's check up yesterday. Lara's shortening fraction is 33%-%35, but echo was made with Lara crying and kicking, so doc explained to us that is like a stress test, and things tend to get "bigger" in that situation, so the measures are the same but could be smaller if would be quiet, and function maybe is 34%, not 35%.Even so, Doctor saw Lara better, she took it like an improvement.

Mitral valve is with the same little defficiency like after surgery, but looking great.

Meds: we are taking fursemide off!!! we have to give Lara only four drops until Feb 19, (she was with 7 drops=7mg) and then, go again on feb 23 to see if everything is ok, wich doc thinks is gonna be great.

She also wants to take of Espironolactone, and leave her just with carvedilol and enalapril. The carvedilol dose will be up because the current dose is to low, but she is doing great anyway.

Doc said Lara can start school without any restriction but low sodium diet! Classes starts here on march 6, I'm happy and scared about it, because viruses in school are there anyway! But also doc said that lara has the same riskes as any other child.

This is so good that i still can't believe it willy!

she wsiched the hours of meds, so I wanted to ask you if we can make supplements changes too, in order to give Lara all the meds and supplements but in less take.

This i how we do it now:

9am
enalapril, spironolactone, carvedilol, fursemide, ubiquinol, ribose. (lara no longer drinks milk after this on any other time of the day)

12pm
carnitine, magnesium

5pm
iron, supradyn (3 times at week), D3 (2 times at week), ribose.

9pm
enalapril, carvedilol, carnitine, magnesium, ribose.

We like to give her carnitine and magnesium with all the meds of 9am. Cand we put those together?

And also we want to ask you if the ribese dose of the day, can we divide in 2 takes, not in 3, so Lara would have less "meds time".

The new plan would be like this:

9am
enalapril, spironolactone, carvedilol, fursemide, ubiquinol, ribose (with half more of the 5pm dose), carnitine and magneium.

5pm
iron, supradyn (3 times at week), D3 (2 times at week), THIS WE WANNA PUT IT AT 9AM OR 9 PM, BUT NOT SURE IF SUPRADYN AND IRON CAN BE MIXED WITH OTHER SUPPLEMENTS. AND TAKE OFF RIBOSE AND DIVIDE THE DOSE IN THE 9 AM AND 9 PM.

9pm
enalapril, carvedilol, carnitine, magnesium, ribose (with half more of the 5pm dose).

So with this plan Lara will have two med takes, no five! Can we do this? is there any interaction between supplements? can we give her all together?
Can we give Lara the ribose dose per day in 2 takes and not in 3?
Supplemets are for life or that will decrease some day too? If it is for life we are ok with it, just asking!

I hope I've made myself clear about doses, is really messy!


So, new are good, still a road to go, but doc thinks that Lara might be meds free some day... this is so amazing. I just can't believe it sometimes. (and then of course i get depresed). And this is in a great part thanks to you and the protocol, and the amazin person you are, THANKS!!!!

Cheers,


Aleta.

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

Berichtdoor Willy » Wo Feb 01, 2017 11:58 am

It is always a good sign if cardio reduces medication.

Is it alright if I post one of Lara's birthday pictures on this forum?

Lots of questions

See posts below
Met vriendelijke groeten,

Willy Witsel

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

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

Berichtdoor Willy » Wo Feb 01, 2017 12:00 pm

Supplements do not have interaction with medication

Carnitine should be given on an empty stomac 30 minutes before mealtime

D-ribose is water soluable, so 3 x a day is better but...............

Put the complete day dosis in a small bottle of water and give her that during the day
Met vriendelijke groeten,

Willy Witsel

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

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

Berichtdoor Willy » Wo Feb 01, 2017 12:04 pm

If she is progressing like this I suggest that we not compensate for the increase in weight

So slowly she gets a lower dosis / kg

If she is completely cured I suggest waiting one year and then slowly reducing supplements

UNDER STRICT CONTROL OF THE CARDIO

Q10 and Carnitine last
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

Berichtdoor Aleta » Wo Feb 01, 2017 4:47 pm

Willy!

thanks so much for your patience in this long post of mine. (and all the patience you always have)

Of course you can post the birthday picture :)

I'll give Lara carnitine and magnesium with morning meds then, and the ribose still in 3 doses, because she drinks water when ever she wants, sometiemes a lot and some other to little. :(

I'm very happy about all of this! I hope and pray this keeps getting better or like this!!!!


Thank you so much Willy, you are the best!

Aleta.

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

Berichtdoor Aleta » Ma Mei 08, 2017 10:32 pm

Here is me, reporting myself to let you know that panic week has began. Thursday morning cardio check up.

I hope everything is doing great there.

Aleta.

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

Berichtdoor toneel » Ma Mei 08, 2017 11:23 pm

Hello Aleta,

I understand your feeling but I hope you can have some rest in your mind.

We have een appointment for a check up on 31 of May en its been a long time we were in hospital to see a docter, more than a year. But Benjamin is growing en he feels oke...so I try to have some trust. I hope you can have too.

Succes Thursday.
Neeltje
groeten Neeltje
een hoopvolle moeder

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

Berichtdoor Aleta » Di Mei 09, 2017 12:03 am

My panic is not that big as it was at te beggining, but is always stressful and with anxiety moments.

I hope Benjamin make it great at the appointment, I believe he will, at least what I see in facebook photos he is a big and happy guy! I'll be thinking of you, and also keep you updated.

Best best best wishes!

Aleta.

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

Berichtdoor Willy » Di Mei 09, 2017 10:46 am

I can understand that I am Mr Panic & The Prince of Darkness :D

But there is a cure

Ask Lara how she feels, she will tell you that every thing is fine
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

Berichtdoor Aleta » Di Mei 09, 2017 5:21 pm

You made me laugh :)

She feels good thanksfully

Thanks for being here always.

Aleta.

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

Berichtdoor Aleta » Do Mei 11, 2017 9:34 pm

Hi Willy!

We've came back from cardio check up. Lara has the same numbers that last time in february, 32%-35% Shortening fraction- 55%-60% Ejection fraction.

This is normal function, and even if the numbers are not better, are very good numbers, so the same is good!

About the dilatation, Lara has the same measures that she had at diagnosis when she was 5 months old, now she is 3 years and 4 months, so what doc said is that Lara can be all her life with the heart working like this with no problem.

Now I just don't know if I'm worry too much or if everybody are worry too little :o

Benjamin (my oldest boy, 7 years old) compleined yesterday of pain in the chest. So cardio made an ecg and everything was ok, she said that is very comon when kids are growing, they have pains all over because their bones and muscles are, well, growing.
She didn't do an echo on him, but give us a standard report for his age, and the heart measures are a few mm less than Lara, so, if Lara's heart does not get more dilated she will have normal measures at 7-8 years old????

Just something to worry about.

So, besides my non stoping worrys, Lara is graet, she can do any sport for her age, go to preschool, etc. And doc wanted to see her in 6 months, but when she saw my panic face, we came to september :) so 4 months it is.

Again Willy, I have not enought words to thank you. I believe if you waren't there 3 years ago, we wouldn't be here now, so thank you a million times!!!!!

Aleta.

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

Berichtdoor toneel » Do Mei 11, 2017 10:37 pm

Fantastic.
groeten Neeltje

een hoopvolle moeder

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

Berichtdoor Willy » Ma Mei 15, 2017 4:24 pm

Do not worry about Benjamin too much, the cardio is right pains al over the body of a fast growing child

5%-60% Ejection fraction. is excellent

I said this more then a year ago that Lara will "out grow" her large heart. The size will stay the samen and Lara gets bigger.

When is it the time to reduce meds? Ask cardio!!
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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Lid geworden op: Zo Aug 03, 2014 6:39 pm

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

Berichtdoor Aleta » Ma Mei 15, 2017 5:20 pm

Hi Willy!

We are off Fursemide already since november. Next will be stop spironolactone, but she said with no rush.

Pediatrician stopped iron and supradyn too. :)

Cardio didn't raise the dose of any of the heart meds, she said before that carvedilol will be raised but as Lara is doing good, she leave all the doses the same.

I guess not raise deses is good :)

I feel very happy this days, thank you so much!

Aleta.

Aleta
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Lid geworden op: Zo Aug 03, 2014 6:39 pm

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

Berichtdoor Aleta » Wo Jul 05, 2017 10:16 pm

Hi Willy, how are you? I hope you are doing great... I don't hear from you since forever...

I've sent you an email but I think maybe you don't got it. We were in California and we wanted to buy the suplemments, we though it was something easy to do if we were there in US, but is not. Now we are back in Argentina, and this is what I wrote you back in the email:

i willy! How are you doing? We are at United States, in California on vacations, and we purchased supplements to take home. But we got from Amazon a magnesium that is not the one we always use. I write you to the email and not the forum because i still don't know how paste pictures there. Here are the photos of the jigsaw magnesium that we use and the one that they send us. The new one has no malic acid, and i think that is important, right? We travel home tuesday, so no time for change it, we'll ask from home but is gonna take about to weeks to get it, can in the meantime use this? Is any good, the same, bad?
I send you a big hug and i hope you are doing great.


I still can not put pictures on the forum, but the magnesium we got is Jigsaw magnesium w/RST (B-free), and in the supplement facts it says Vitamine C 10mg, magnesium (as dimagnesium melate) 500mg.

This has NO malic acic so I wonder if that is important. We purchased the one we always usse but it will be here next week, is ok if in the meantime i give this new one to Lara?

I also sent you pictures of the travel and things that Lara did that I never imagine she couls, so as usual, thank you so very much.

Hugs!

Aleta.


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