Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

The pictures you and Sebas make are realy excellent. You both are real artists

[Aleta]

Hi Willy and Corrij!

I hope you are doing well.

Yesterday I went to see the metabolic doctor, because we needed a certificate, so she told us to go this week, we still have to come back in march. I saw her assistant, I believe he is an intern.

The blood tests are "fine", still a few organic acids a little high, so they can´t say for sure if Lara has a mitocondrial isue or not. Even if they made a biopsy they wouldn´t know because all of genes and info they still not have.The levels are really a LITTLE high.

Everything else was ok, about the magnesium, is in the high normal range, so he advice to watch closelly the diarree, because it would be a big deal if Lara gets deshidrated.

He told that the supplements doesn´t work for everybody, and that the improves that we saw in Lara´s heart; they can´t tell if were because of supplements or not, or if Lara is just groinw, and with that the mitocondrias and enzimes are working better and is getting better by her own.

He saw the last two echos they did wich we have for the shortness of breath, and the larynge sound (one month later of last check, when she got an improve in the mitral valve deficiency, and SF went up to %29) and they were the same numbers, so in one month didn´t improve a bit. Is that ok? or we have to wait more in between checks to see improvments?

The thing is: he ask the Dr and raise up L Carnitine to 900mg at day! he said that they give 100mg at Kg. WOW

And about the Qo10, he told that 150MG is wath a baby has to take as an adult, that she will be all her life with same amount. And that Ubiquinone and ubiquinol are the same, because aven if one of them absorves better and more, will be the same result as the process is by acumulate with time.

Going to the hospital get me so depress, i don´t know if is it because they don´t say what I wanna hear, or how they say it, but I left hopeless and sad from there. I´ve finish the day reading in our facebook group that a mom will stop supplements because in four years didn´t make any diference, and other one try it but still the child needed a transplant.

Could be Lara have showed improvments, and now stay the same?

I´m sorry, I got scared, but now I´m better, don´t worry, not panic, just asking!

Regards, Aleta.

[Aleta]

Hi!

yesterday I forgot to ask you if the is gonna be some bad interaction with all that much L-Carnitine and the other supplements.

Lara is total cold-free, we´re giving 30% of a pill of magnesium twice at day since two days ago, she seems to tolarate well.

I´m sorry if I get mad at the doctors sometiems and I vent here, is just frustrating... if they don´t see a lot of papers about something they just don´t believe it, aven so, I´m grateful to all, because I see Lara so good.

I´m VERY grateful to you too!

have a nice weekend!

Aleta.

[Corrij (therapeut)]

Hi Aleta,

You have to learn to get a little bit more patience
Lara is doing oke at this moment and that is the most important one.
Doctors are the same all over the world
There is no interaction between the carnitine and the other supplements. I believe that the amount is very high but i guess the doctor knows what he`s doing.

So stop worry and enjoy Lara, she`s doing great. I know its easier said than done.

Have a nice sunday,

greetings,
Corrij

[Willy]

I agree with Corrij you are etntering the slower phase were we hope Lara will remodel here heart.

A checkup in march is also to soon to see these effects

Patience as Corrij said is what you need

[Aleta]

yes I know I need patience, believe me, I´m having a lot more than I ever did.

I´m worry about the mitral valve and distolic function, some doctors said the dilatation comes after the bad work of the valve, some others that is a consecuence of the dilatation (the mail cardiologist said that).

Also about the possible mitochondrial disorder...if the heart get super well the mito isue would be there forever, so it would be like time bomb?

I´m not thinking about this all day, I´m enjoy the day with Lara, but one or two times at day reality hit me

Even if is to soon to see improvments in this phase, I hope in march we´ll see a better work of the mirtal valve

cheers and have a good week!

Ale.

[Willy]

Patience!

And do not use words like Time Bomb

Words have power

[Aleta]

I know... hopefuly the sebastian and benjamin´s feel about Lara will be right and she get cured, I know they know stuff, I´m not that kind of person.

patience

[Willy]

I agree with the men in your family

and I know stuff too

[Aleta]

I'm not having the best days, when that happen I start to doubt about what they say they know, and I'm reading your reply just now, late night. You've made me smile again. Nobody succeeded at that today.

Thank you.

[Willy]

Congratulations with Lara's birthday!

[Aleta]

Thank you!!! it was almost two weeks ago, but we never find a moment to send pictures, we´ll send more. I believe she had fun!

cheers,

Ale.

[Willy]

I saw the pictures, she had fun you can say that again

Two weeks from now I will have a 15 day holiday in La Palma, away fromthe winter here

But I will look at email and forum also in La Palma

[Aleta]

Great, have a good time!

If Lara feels OK, two weeks from now maybe we´ll do a little family trip for a few days.

Lara is doing more poop than usual, very liquid but not too much each time (and yellow, sorry about details). Pediatrician thinks that might be a tooth coming, so I still giving Lara 1/3 twice a day of magnesium. Sounds good?

She also is trying to walk by herself! so funny!

Benjamin has a theory: if she looks more and more "crazy" (moving and laugh all the time) is because she is getting cure. I have a little crystal ball at home

Next week pediatrician and march 19 cardiologist!


Cheers!

[Corrij (therapeut)]

Hi Aleta,

Sebastian is right

Teething can cause more frequent watery poops because of all the excess saliva babies create and swallow

A theory is that the increased amount of saliva produced during teething can cause diarrhea if too much of it is swallowed, according to an article published in Clinical Pediatrics titled "Recognition and Management of Teething Diarrhea Among Florida Pediatricians." The article, which was written by Dr. Jeannine Coreil and two of her colleagues, summarizes clinical studies on teething and diarrhea. It states that although the majority of pediatricians do not believe that there is a direct correlation between teething and diarrhea, the percentage of pediatricians who do believe there's a correlation -- about 35 percent -- has actually increased since the 1970s.

greetings,
Corrij