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:
enalapril, spironolactone, carvedilol, fursemide, ubiquinol, ribose. (lara no longer drinks milk after this on any other time of the day)
iron, supradyn (3 times at week), D3 (2 times at week), ribose.
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:
enalapril, spironolactone, carvedilol, fursemide, ubiquinol, ribose (with half more of the 5pm dose), carnitine and magneium.
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.
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!!!!