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 feb 20, 2016 4:04 pm

If she does not get diaree the dose is not to high

To my knowledge the shortning fraction SF is max 30%

If so Lara is witrh 28 only 2% under the max

Check this please with the cardio
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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 » di mar 08, 2016 9:35 pm

How are things going in sunny Argetina?
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Willy Witsel

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

Bericht door Aleta » di mar 08, 2016 9:55 pm

Hi Willy!

Sunny Argentina in in the way to autum, it feels like summer is going, school has began, so my virus panic has began too :(

So far so good, our Lara, if she keeps this way, can attend to kinder next year. This year we have permission from cardiologist to attend to a play-with art-dance-workshop for little children once a week. We started to go the past week and lara was happy to be around childrens :)

We even can go to birthdays and have a more social life , and the entire family is enjoying that too.

Last time we saw our cardiologist I've updated you, but not sure if I've updated the pediatrician appointment. She was very happy about Lara, she gained more than one Kg since surgery, so heart was holding Lara back but know she seems unleash. She has to see ped again in 20 days.

Lara's apettite is much better than before surgery, but stil not a great eater, and she still wants her bottle. Not for the milk itself because if I put the milk in a glass she doesen't want it, so is the suction thing she likes, like baby stuff. Our ped told us that maybe after surgery Lara would have some baby things again, so here it is.

I can't believe see her this good, I hope she keeps this way forever. Strong and happy.

She recovered very fast from surgery, doctors are kind of surprised like us. lara is a strong girl, you were right. Cardio said that the last trail from surgery takes one year to go, so heart is still in recovery.

I wanted to ask you something but I always foget. When I give Lara Carnitine, some of it stays in the seringe, so I don't know how much of a dose we lost everytime. What should I do? give her some more to reach the dose? She is on 500mg twice at day. (that was the metabolism doc prescribed). We are using now foods L-Carnitine.

I hope you are doing great and having not so much cold, we are sending warm tempertures to you from here!

Cheers,

Aleta.

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

Bericht door Willy » do mar 10, 2016 6:40 pm

Excellent

Give here a bit more carnitine to correct the loss

Carnitine is very save
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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 » do mar 10, 2016 6:41 pm

Willy schreef:To my knowledge the shortning fraction SF is max 30%

If so Lara is witrh 28 only 2% under the max

Check this please with the cardio
did you ask?
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 » do mar 10, 2016 7:35 pm

Yes, the normal Shortening fraction is between %30 and %60. So we still aren't totally inside the normal, I hope we get there soon!

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

Bericht door Willy » vr mar 11, 2016 10:57 am

Are you sure the range for SF is 30 - 60, I thought 30 was max

But maybe I am wrong
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Willy Witsel

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

Bericht door Corrij (therapeut) » zo mar 13, 2016 2:38 pm

Normal echo measurements for children

Normal SF is 28-44%
normal EF is 56-78%
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 » zo mar 13, 2016 6:57 pm

Thanks Corrij! I believe cardiologists want tu make sure a child is inside the normal and count from %30, but i read several times that normal is %28.
One thing our cardio explained to us, is that she measures SF in several ventricule's places, and the lowest number we see in the report is the lowest place she could measure, and the highest the one place the echo showed. In last echo Lara was %26 at lowest and in a lot of places %30.
April 7 is the next appointment, i hope she keeps improving!!!!
The report now says: dcm with mild distolic and systolic disfunction

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

Bericht door Corrij (therapeut) » ma mar 14, 2016 1:17 pm

She`s doing great :D :D
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 mar 14, 2016 5:03 pm

yes right? I was thinking about how better she got when I was writing the reply to you!

I don't have enough words to thank you both!!!

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

Bericht door Aleta » ma apr 11, 2016 10:59 pm

Hi Willy and Corrij!

I hope you are doing very well.

We had our check up appointment with cardiologist on thursday, and Lara is even better :)

The little-stronger-awesome-lady reached %28-%32 SF, so now she is at low normal range!!! This is so awesome because at diagnosis time she was at %19, I can't believe it, do you???

Doc is very optimistic, she said tha puberty shouldn't be very problematic if Lara keeps her heart like this, and she sees no reason for a worsening at this point, and that speak about a transplant like we were at first in diagnosis times has no point right now, maybe at 40's of course those are all guessing seeing how Lara is doing at this very moment, she has no crystal ball. And of course we have to keep avoiding virus, etc, but we can have more social and outside life, even travel a bit, we went to the beach last week :)

We were giviing Lara fursemide 24mg, now we decrease to 20mg, all the rest keeps the same.

her heart hasn't get more dilated, the measures are the same since april 2015, doc said that that is a big acomplish, after six month from diagnosis is very weird a heart getting smaller, but as Lara is groing and the heart is the same, is good enough.

I'm very gratefull with you, and very happy about Lara's health, I only pray she keeps this way.

About her weigh, she didn't gainend more than 100gr in last month, but grew 1cm or so, she wasen't in the mood to take measures and as she is strong and quick we had no chance to do so.

Agan, THANK YOU, I thank god for finding you!

I hope you are doing great and enjoying springtime!

Aleta.

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

Bericht door Corrij (therapeut) » wo apr 13, 2016 11:29 am

Hi Aleta,

What a great news :D :D :D
I`m very happy, Lara and also Aleta are doing great.

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 apr 15, 2016 1:05 pm

The little-stronger-awesome-lady reached %28-%32 SF, so now she is at low normal range!!! This is so awesome because at diagnosis time she was at %19, I can't believe it, do you???
Excellent!! Congratulations to you ALL!

Operation and change to a new Q10 might be the reason of this improvement

Did we change the carnitine also?
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 » vr apr 15, 2016 3:50 pm

Hi Willy and Corrij!

Lara is havin L-Carnitine from Now Foods, 500mg two times at day. Her weigh is 11.650kg, maybe we should increase dose? Metabolism doc said it was 100mg every each Lara's Kg.

Congratulations and thanks to you both too!!!

Aleta.

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