Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

sorry for the late reaction on your may post!!

My mood improves slowely, only the mornings are bad. I counter that by early out of bed and then walk with the dog

Execelent that the cardio did not raise meds!!

I also use Jigsaw you mentioned, so look at the dosis magnesium Lara needs and break the tablet the right way

[Aleta]

Thank you Willy, and I really hope your mood improves soon.

I showed facebook pictures of you to Lara and she wanted to know about your family!

Lots of hugs!

Aleta.

[Willy]

It is already much better then a couple of months ago, I am going in the right direction !!

[Aleta]

Hi Willy!

I hope things are doing good there!

We had Lara's cardio check up last week, I'm sorry for take this long to write, but I had my arm broken, then surgery, a day after clinic discharched me we had cardio, and after that took a rest. I'm ok now (it's a lie, still hurts).

Lara's heart improved a little more, Shortening fraction is now %33-35, it %1 but it's a lot for us!

The size was 3 or 4 mm bigger, but doc said not to worry because Lara grew a lot lately, in last 4 months she gained 1kg and grew 3cm!
I asked if what we need is that heart siza stays tha same while the rest of her bdy grows, and doc said yes, but is a little and said that is nothing to worry about (I'm a little).

Then she compared the Z-Score from 2015 to 2017, then was 7,2 and now is 2,3!!!!! Thank god!

So, doc stopped Spironolactone, and decrease carvedilol. it was 4,200mg and now a pill of 3,125. Scary.

We have to go back october 9 to check if everything keeps ok, and if it's so, I believe she said 4 months, but I'll ask less time!!!

Willy, all of this is in big part, thanks to you, you can't imagine how grateful we are.

No I'm gonna put my arm to rest again.

Big hugs!


Aleta.

[Willy]

Good news about Lara bad news about Aleta

Cardio is realising that she is slowly improving from an chronic incurable disease

Do not worry about decreasing MEDS the cardio does only decrease meds because they think they are not necessary any more

[Aleta]

Thanks Willy, I'll give you the update of the october 9 check up.

Happy autumn!

[Willy]

oke

[Aleta]

Hi Willy!

We went to Lara's check up after two weeks of decrease Carvedilol and stop Espironolactone. Well, LV was about 1 or 2 mm smaller, and shortening fraction was %35/36, a little better. Could be a better day for her or something because the difference was small, but still, function at normal range, with no diuretics!

Heart still weird shape and a little enlanrged but no giant like in the beggining.

We have to go back at the end of january, and if things keeps looking like this, doc will start to decrease one of two meds Lara is still on, carvedilol or enalapril, and with time leave her wit just one. This is great but also scary!

What do you think about all of this???

Thank you so much Willy, I hope you are doing great.

Ale.

[Willy]

What do you think about all of this???

I think she gets better

this is for cardiologists completely new, Lara gets better and better

So I can understand thet they are carefull with lowering the meds

Congratulations with this result

[sasje1903]

Hi Willy!

We went to Lara's check up after two weeks of decrease Carvedilol and stop Espironolactone. Well, LV was about 1 or 2 mm smaller, and shortening fraction was %35/36, a little better. Could be a better day for her or something because the difference was small, but still, function at normal range, with no diuretics!

Heart still weird shape and a little enlanrged but no giant like in the beggining.

We have to go back at the end of january, and if things keeps looking like this, doc will start to decrease one of two meds Lara is still on, carvedilol or enalapril, and with time leave her wit just one. This is great but also scary!

What do you think about all of this???

Thank you so much Willy, I hope you are doing great.

Ale.

Great news Aleta!!!

[Aleta]

Sorry for the late response, take care of my arm takes so much time of my day

Yes, are great news! But is hard to be absolutly happy, I'm still scared about her future. So many kids reach normal ranges and sizes and after a few years they get worse.

I,m not sure axactly how unpredictable this disease is, but I guess the answer is enjoy the present.

I'll be wainting to hear good news about Emma!
Hugs!
Aleta.

[Willy]

I suggest that we adjust dosis on the basis of Lara's weight until she is completely of meds

then we stop adjusting so Lara will get very slow "less" supplements

This maintenance dosis she will use for the coming 10 years

[Aleta]

Hi willy

Ok, i'll do the Numbers and get back to you.

Thank you!!!

Aleta.

[Aleta]

Hi Willy, I hope you are doing well. I'm still recovering my arm, it's taking a lot!

I did the numbers of Lara's supplements doses, and I belive she still is alright, because we always have given her a little more.

Laras's weight now is 14 kg
first, by prescription of metabolism doctor she has 500mg of Carnitine twice at day, so 1gr at day, and 150mg of Ubiquinol in the morning.

You agreed that that was ok, since Lara is fine with it.

Magnesium:
200-400mg - 70kg/ 2,9-5,7mg - 1kg day
5,7x14kg-79,8mg
Lara is having 42mg in the morning and 42mg at night. that is one 125mg jigsaw tablet split in 3, we give 2/3 at day- 84mg

Ribose:
12gr-70kg
0,17gr-1kg
14kg- 2,38 gr
we give Lara 1,5 gr in the morning and 1,5gr at night

Is this all correct?
Lara is doing fine, she had a virus last week and still is a little tired, so I'm a little worried. Next week she finish her firs year at preschool!
And in january next cardio check up.

Lot of hugs and thank you!

Aleta.

[Willy]

Ribose:
12gr-70kg
0,17gr-1kg
14kg- 2,38 gr
we give Lara 1,5 gr in the morning and 1,5gr at night

15 gram for an adult of 70kg

Vitamin D? Do you know her blood value?