BEHANDELING HART EN VAATZIEKEN

Thanks Willy!
And thank you for the beautiful song, she loved it

Hi Willy! I have no permission to read that link... Lara is having 1/3 of one jigsaw tablet (100mg) in the morning and 1/3 at night, someting like 33mg in the morning andd 33mg at night. 66mg at day. Lara's weigh is 17,200kg, so 17,200 x 3 = 51,6. You say that we get lower dose now with jigsaw or wh...

Hi Willy! Yes this is a good team! Yo asked: Why did we decide to go for JigSaw magnesium time released? Diarree? Yes, but she was a baby, maybe now she could handle other options like citrate. I get Malate magnesium only jigsaw and Now food. Citrate has more options, I couls even get some brand her...

Hi Wiily, I hope you're doing great. I have a quick question, Lara is having 42mg twicw at day (84mg total), of magnesium. We use jigsaw health magnesium which is magnesium malate. I'm having truble getting that brand. Now foods os ok? Is there any other brand? She hast to take malate or can have ma...

Hi Willy! Lara did great at check up, the numbers are still the same, her left atrium and ventricle are still dilated, but very little. Cardio told us that the atrium probably is bigger than normal in consequence of the mitral ring that had to be reduced in the surgery. The valve is good and the siz...

Hi Willy, great timing!

Our check up is may 3, next friday. Already freaking out.
She looks great with lot of energy but this year started preschool 7 hours at day, I hope this wont be too much for her.

I'll thell how it goes, and thank you for think about us!

Aleta.

Thank you! is Sebastian's number

Sounds great, jan 16 she has pediatrician appointment, we'll tell you the knew. On jan 23 she turns 5 years old!!!
Have an amazing 2019, you deserve all the best of the world!

I love to read "that is not a big problem"!

Not for now, but I wonder if those acids means that Lara counld never leave supplements.

Hi Willy< I was just reminding you how things were at the beggining with thos blood tests.

Hi Willy! At the biggining of all, in diagnosis time, in the first clinic we were reffered, they did a lot of tests. On of those was asked by the pedriatric methabolism specialist. Those tests results was some acids a little high, and in case Lara has a mitocondrial desorder, they prescibed 150mg of...

Hi Willy, long time no see! Lara had her check up with cardiologist after six month, shortening fraction the same, %34-%36, heart size the same, but Lara grew a lot and gained weight, so Z-Score went down to 2.1! Pleaseee, she needs to keep on this track! Also, meds still the same, only enalapril ha...

You made me SMILE

Thank you thank you thank you

Hi, Willy and Sas! I didn't get the forum updates, that's why I didn't write back. Lara's first shortening fraction at PICU was %19, after a round of levosimendan was %20. That was in june 2014, in august we started supplements and in october she got %28. In December 2015 She reached %30 but she nee...