Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

WHAT SHE DOES NOT HAVE NON COMPACTION CMP???

I hope Lara out grows the mitral valve problem. It is indeed a showstopper for having a smaller heart

[Aleta]

Nope, she don´t have a non compaction CMP. Only a few trabeculations but not enought to be a cardiomyophaty itself, in fact the doctor said that she is watching trabeculations now that she is knowing Lara. but in a few echos she will stop to even measure that.

It seems that the other doctor has the habit of tell things worst than they really are, and if something good happens, then patiens can be happy and have hope. nice. Even so I{m grateful that she took care of Lara for almost a year, I must say.

We have other echo by other doc, just to see the caronaries, remember? I had the report just yesterday, If you want to I can translate for you (is a scan sheet). Has a lot of measures and Z scores that I´ve never seen.
I got worried because it says 22% SF! but as is from a month ago I´ll stick to the last ones that says 28%.
I´ve had a panic day as you can imagine.
The thing is that this doctor (who made the coronarie echo) agrees with the diagnosis of the current cardiologis. Lara´s condition is not severe, is MODERATE.

So, this is a catch of breath, but the desease is there and is not easy to be optimistic (for me of course), and the mitral valve is a new concern for us (for both), we had so little information with the other team, and we just now got to know tha mitral valve could stop her positive evolution

But Lara is a ninja baby, she´ll be fine, she is very strong.

Regards,

Aleta.

[Willy]

I also had the idea that lara was not as bad as the cardiologist said

Ask your new cardiologist if it is possible that Lara out-grows the mitral valve leakage

Normally, after a year, you see the heart is getting smaller. But in Laras case this process is possibly disrupted by the valve problems. Please ask this also.

[Aleta]

Hi Willy!

We´ll se her tomorrow and ask. June 19 is gonna be one year from diagnosis, I believe we started the protocol in August?

From what I´ve get, she thinks that the mitral valve could be stoping her improve, but it´s just an idea, she wants to wait and see. What did really improve is heart function she said. She remarked that Lara is better from the diagnosis time. What she can´t tell is the atrium evolution, cause she hasen´t seen measures from that, in the reports only says "dilated atrium" with no measures. We´ve asked for a history resume in the other hospital and they give us a paper that says where Lara was diagnosed, when, the weight and that she doesn´t shows deterioration from diagnosis time. NO MEASURES OR ANY KIND OF VALUABLE DATA.

Anyhow, the mitral valve at diagnosis was 90% defficient gradient and now is 65%.

We gonna dig something more tomorrow.

If you wanna see the report with Z scores let me know.

Today I was reading an old magazine in the waiting room of the dentist and it was your royal family spending chrismas in Villa La Angostura (where we spent our honeymoon), I´ve thought of you all!

Cheers!

Aleta.

[Aleta]

Hi Willy!

We had cardiologist appointment today. First of all, Lara´s heart is stable and the same SF and measures. A little bigget the atrium but she already told us taht it was going to happen whe increase carvedilol dose. But the ventricule was a liiiiiiiiiiiittle smaller last week, and that one didn´t get bigger
We have to come back in 3 weeks, I believe is gonna increase carvedilol again, the plan is take her to 3,125 mg twice at day. Today the heart sounded more relaxed.

About mitral valve, doc don´t think that might be the cause of DCM, when mitral valve pushes to deteriorate the muscle, happens in years, not in four month. She don´t think that this is from birth. Believes more in a virus.

What will happen first, if the mitral valve get better and then the muscle, or the muscle first and then the valve, she doesn´t know, we´ll have to wait. Could be get better the muscle and not the valve. we´ll have to wait.

She said that if Lara revert this, will happen in 3 or 4 years "if is God´s will", I´m trying to convence God every day

But we have the protocol, which I belive is helping to be better and heal, I don´t lose hope on it!

The doc kept all the echos since diagnosis and will compare numbers, the measures of ventricule and SF are all there, but atrium is not, maybe in one of the first when Lara was in the hospital, but in the pics. and will try to reach the other cardiologist to talk about what measures she has, because they didn´t kept the echos recorded, maybe she has notes ore something (I´m very mad about that).

So, that´s the news, I´m gonna get in bed my ninja baby

Have a graet day

Aleta.

[Willy]

Aleta we are on holyday so I do not have alway internet access

You started in august with the protocol

Normally I see size improvements after 1 - 2 years. So I agree we have to wait and see

In medical terms the call this WATCHFULL WAITING

And maybe we have to decide to give her oil filled Q10 capsules. Lets discuss that when I am back from holyday in august. Then Corrij is also available I hope

We prevented last two week that here husband, Theo, died from heart failure. The hospital wanted to stop treatment because he was dying.

[Aleta]

Hi Willy, I´m sorry but I did not understand quite well what happened whit corrij husband, is he all right?

My god, please let me know.

Send love to corrij plesae, and I will talk to yo if something comes up.

Lara has appointment with cardiologist july 2. Fingers crosased!!!

Have a nice holiday!

Aleta.

[Willy]

Corrij's husband almost died from heart failure and the hospital wanted to stop treatment

But we need time to solve things with the protocol. So it was a battle to force them to keep on treating him and we won.

He is now slowely recovering from heart failure AND kidney failure, but not out off the danger zone yet

It was a very busy two weeks in my holyday

[Aleta]

Thank god you were able to keep tratment! I hope he get out of danger zone soon and get back home with corrij.

Send them my love.

Aleta.

[Willy]

Theo died on monday. we could not save him..

[Aleta]

That is sad. How are you all?
God, life isn´t funny at all.
I hope he had a good and happy life, and now a new good journey.

my love for you all, and a special big hug to Corrij.

[Willy]

I agree, sometimes it is realy hard

We both tried everything to cure him and at first he started to get better, then the hospital reacted to late on a kalium deficiency, his heart stopped, his ICD reanimated hem, but the next day he died.

[Aleta]

Hi Willy, just checking in.

I hope things are getting better there.

Lara had a cold (still have a little) and got fast breathing, we got scared and took her to the cardiologist, (we saw our cardio´s sister who is cardiologist too) that was last week.

Lara was the same as always, the thing is that kids with CM has extra work to breath with a cold that kids with no CM, and we can see it from outside. She add more forsemide in order to no acumulate fluids in the lungs, and as our check is tomorrow, will se if can reduce it now. I believe the plan is to raise carvedilol again.
Even so, Lara is movin a lot and doesn´t stop! and we can tell she is a little short of breath than before

I´ll ask about pro BNP.

As we change doctor, she wanted to see the evolution the atrium has made this year, because there is no measures in the reports. Only says: "dilated atrim"
I´ve ask for it in the other hospital and what it saids in the report is what they have too, and the echos are not recorded. aaaaaagh
But our lovely new cardiologist has all the old reports and she will check what evolution has made the ventricule which it has measures in the reports.

So, I´ll tell you how Lara goes tomorrow, and wish us luck!

Cheers

Aleta.

[Willy]

It is unfortunately that there is no history on echo data

pro BNP would be nice, history of the last year would be better.

I do not think you have to worry about tomorrow, Lara "says": everything is fine Mam

[Aleta]

Yes, I hear her

the only thing concerns me is the fast breathing, is more often now and she is been moving a lot since a while ago now.

But maybe could be the higher betablocker dosis, right?

She is beatiful, I´ll send pics later