Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

I think this is good news!

If Lara follows the path of your grandmother she might be 82 too

And that Lara follows a standard normal development curve is also good news

[toneel]

Hello Aleta,

I see you have difficult times.
When you look at the other children with cmp who didn't make it, then you get sad.
When I think about them I 'm scared too.

We do'n't know why Benjamin got cardiomyopathie, so when I'm thinking that it might be a familiar thing I freak out too. I focus on everything that is oke. a part off his heart is not working, but I hardly think about that. I see that he is happy, energetic, doing well at school etc etc.

Please try to see Lara as an individual and how good she is doing now. Try not to listen to and think about all the sad stories everybody tells you. Try to enjoy every dag with her. Your fear ruins your days with Lara and Benjamin. Try to have confidence.

I know that the uncertainty is very hard to live with. But please try to have confidence in the docters, in the protocol and most of all in your daughter. Let her good development give you hope and strenght en let not the bad stories break you down.
Don't let the uncertainty take your live over. This life with all the fear is not good for you and your family.

I know that that is really hard, but please try to focus on everything that is going well. And as I read everything you wrote... al lot things are going very well.

If you need some more support and if you want to talk about it, you can chat with me on facebook again.

give Your children a big hug en and yourself too.

love from Neeltje

[Aleta]

My mission in this life is that my childrens die for been old, no for illnes
thank you both

[Aleta]

Willy, we have a doubt about the meds. We were wondering if we can mix the supplements and give Lara less seringes, but we decidet to give her separate just in case... but it got us thinking: is there any interaction beetwen some of them? I mean, as giving her togheter. this is how we do:

9:00 am
spironolactone
fursemida (diuretic)
Carnitine
Magnesium (15 minuteas later the first bottle of milk)


12:00 pm
carvedilol
enalapril
Qo10
ribose


14:00 pm
fusemida


16:00 pm
spironolactone
iron
supradyn
ribose
D3

20:00 pm
fursemida
magnesium (15 later milk or meal)


00:00 am
carvedilol
enalapril
spironolactone
robose
carnitine (ussually she does not eat a while ago)


01:00 am
fursemida

We are given her a bunch togheter in order to not bother her all day with something because she get a little mad, but if there is any interaction we can swich. we been doing this about a month or so.

next week we have appointment with her pediatrician, we have to ask for pro BNP, Vitamine D dosage, and CRP, something else?

cheers!

[Willy]

What are seringes?

[Aleta]

sorry, syringe
http://www.thirteen.org/edonline/studen ... eringe.jpg

we give her the meds as sirup, and the ones that come in pills we diluted in water, then we put in the syringe (without the needle) and give her by mouth.

[Willy]

Is Q10 also solable in water?

[Aleta]

yes, are capsules with powder inside, 150 mg

[Willy]

There is NO interaction between supplements and drugs

Q10 should be given with a meal were Lara also eats fat

Carnitine on an empty stomach

[Aleta]

It's ok the fat that has the milk? Besides that, the nutricionist told us no fat. What other food could it be?

[Willy]

Milk contains fat so no problem

[Aleta]

great! thank you!

[Aleta]

Hi Willy! Tomorrow (today when you read this) we¨re going to see the pediatrician. We gonna ask for pro BNP, Vitamine D dosage, and CRP. Something else?
When do you prefere to make the test? is there a laboratory near the offece and maybe we can go tomorrow, or you want to make it in other time?
wish us luck!
cheers.

[Willy]

These blood values are fine. When will the check the pump function EJF?

My planned test was half december but an other test in between is fine

[Aleta]

The next cardiologist appoimtment is dicember 10.