Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

Is there any problem if I give her afternoon take, with the supradyn? At that hour she takes Iron, Ribose, Supradyn, Carvedilol, Fursemide, and two times at week vitamine D3. Can I include Ubiquinol with that?

Give Q10 after or during a meal where she also eats some fatty things, like butter, olive oil etc

[Aleta]

Hi Willy and Corrij!

I hope you are doing well

I was thinking about magnesium dosis and weigh. I believe is time to increase it.

Lara´s weigh is 10,1 kg, she is having 1/3 of jigsaw tablet (about 30mg).

I´ve made the math and for 10,1 kg she needs 57,57 mg. Is that correct? It would be half a tablet because one tablet is a little bit more than 100mg, right?

I can´t find the Ribose calculationWilly made, maybe we should increse it to... she is havin 3mg or so divided in 3 times.

August 27 we have cardio check. (starting panic week, even she looks great)

Cheers

Aleta.

[Willy]

magnesium dose adult of 70 kg 200 - 400mg Lara --> 29 - 58 mg per day

ribose adult 70 kg: 15 gram Lara --> 2,16 gram per day

I hope you made a mistake with your ribose dosis you wrote 3 x 3mg, Do you mean 3 x 3 grams?

If so you can reduce it to 3 x 1 gram per day

[Aleta]

willy!

yes I made a mistake, is 3x1 mg per day

I should give her half a tablet of magnesium twice at day, right? each jigsaw tablet has a bit more of 100mg
(it says " serving size 500mg=4 tablets)

Thank you!!!!

Aleta.

[Willy]

half a tablet is fine

how is the new Q10? Has lara no problems taking it? and do not forget, during a meal were she eats also a little bit of fat

[Aleta]

Lara has no big problem, she hated at first, now I thing she is getting used to it.

I try to cut the pill in a half and take all the content. There are some little -like seeds- that if I squize it, they stay inside.

She take it with breakfast, and afternoon with a snack.

She had two days very sleepy and the last two she is non-stop-moving. I don´t know if that is a Q10 thing.

Also she is sleeping in her room now And she seems happy about it!!!!! I thought she was going to miss me more!!!!She is growing and that is what matters.

Cheers

Aleta.

[Corrij (therapeut)]

Hi Aleta,

your writing 3 x 1 mg ribose each day?
this must be 3 x 1 gr, a day.

twice a half tablet of magnesium gives her about 100 mg magnesium a day, correct? That is enough.
Its a big step to sleep in her own room and in the end better for mom,

greetings,
Corrij

[Aleta]

Hi Corrij,

Yes, she is having 1mg 3 times at day.

I´m giving her the new qo10 at breakfast and at lunch of early in the afternoon, because she started to fall sleep 2:30 am!!!

Now she got a flu, since two day ago has fever almost all the time, no she is not for the first time in two days. But, she has a lot of mocus and is agitated, make a noise like she is obstructed, so we are waiting for a doctor.

Last night she had a little bronchospasm but it went away fast. Now I think it came back I´ve already made a steam bath and nebulizations, but she keeps doing that noise.

I´ll keep you posted.

Aleta.

[Aleta]

Hi Willly and Corrij, I hope you are doing great.

Here still fighting the flu, we all got it. We are all better now, but still Benjamin has some caugh and lots of mocus, and Lara...........it became a bronchospasm! A mild one, but scary anaway. She is been handle it like a champ, exept for NO EATING, back to the bottle, and she lost some weigh, I can tell just looking at her.

We´ve saw pediatricians every day at home to check on her, and on the phome with her ped at list twice at day. Tha bronchospasm was mild and today (tuesday, is gonna be wednesday when you read this) her lungs sonded pretty good, we have to check her again tomorrow, and thursday CARDIO APPOINTMENT (so freaking out!).

The thing is I´m worriy because she is tired and sleeping or awake and crying or complaining. I wish I knew which are sings of heart fealure in order to clear that out and be more relaxed. Peds says that she is in convalecence phace, and as she wasn´t eating so good, throat red migh hurt, and fever leaves babys tired for a few days, this is normal. I just don´t know and I get scared. I hope she wakes up better.

Cardio appointment: She was on corticosteroids since two days ago. I know that can cause liquid retention, that could encrease the size of her heart or some area of the heart?
Also had two fever days, tachicardia migh cause a worsening in cardiomyopathy??? Worst day had 140 heart rate, always good o2, 96/97.

Is something do you think I should worry about or ask to cardiologist?

Is gonna be 2 weeks of ubiquinol, I hope that started to do some good to my baby

I´m soooooooo tired of this flu and entire winter!!! Oh, and cardiomyopathy too, that can go away and let my baby leave happy whenever starting now!


Best regards

Aleta.

[Willy]

A virus infection will make here tired. You know that too, the flu makes you tired.

Cardiomyopathy is not an illness that gets worse in two or three days.

So if you notice a sudden drop in Lara's health then you know that it has nothing to do with CMP

Progress of CMP for the good or the worse is SLOW.

What you decribe is just a flu

[Aleta]

Hi Willy and Corrij.
I apologize for not write right after the cardiologis appointment. Lara´s flue kept going a few days more, we sa a lot of doctors, was Bwnjamin brithday in the middle and life has been a mess!

Luky for us, Lara is great now, the thing was that fever came back after a week, and it was a risk that she might be overinfectedd, but as the fever stoped after a few hours, pediatrician thinks that it was a reflex fever from the virus.

She dropp her weigh 400 gr with flue

Now she is fine, eating and playing again, just a lot of mocus.

So, we went to se our cardiologist, she wanted to encrease carvedilol this time, but as lara had the flu, we´ll do it next month, september 24 is the next appointment.

Echo showed that the numbers are the same, she is stable, and is a good thing that she went through a broncospasm and her heart still do it fine

Cardio said that is a great thing tha the numbers are no changing, that give us the possibility of get her heart a normal size in a few years if she keeps this way. What it concerns to cardio is mitral valve, more than ventricule and atrium size.

I heve faith in protocol, and that will happen what Corrij told, that heart will be smaller and valve will work better too.

New carnitine still didn´t arrived. Let´s hope for this week does.

How do you estimate that would take that new supplemets show some improve? Is to soon, right?


Well, I´m still super tired of flu week (we got it), I hope for better times! Spring is among us now


Cheers,

Aleta.

[Willy]

I think also that Lara might "out grow" here large heart size if the size stays the same the coming years

What happened with Lara on a larger time scale is that the improvements she made in the beginning slowed down. What I hope to see is that the improvemnts will speed up again.

Better SF would be an indication. Not getting problems with the energy required for a bigger body is an other marker of improvement. Does she develop hereself like other kids of the same age etc.

All these things are measured in months not in weeks and definately not in days

So at the end of this year we could see a better SF

That is a long time, but on the other hand you can see how Lara is doing the coming weeks and that may give you a good fealing how things are going

[Aleta]

Do you still think the protocol is working? I believe it does, but I want to know your feelings about Lara´s improvements.

One think I didn´t mention because I didn´t though it was important, is that our current cardiologist measures SF 26-28, I don´t know what two numbers means, maybe a variable range? Last time numbers were 27-28. I didn´t mention it because cardiologist said that that was probably because of the flu, forcing the heart work harder. Anyhow, we can take this as a good sing, right?

Energy levels are as good as any other child, she is crazy non stop lady!

even been premature didn´t stop her, she is a little thin, but tall as any girl of her age.

Cheers

Ale.

[Aleta]

Hi Corrij and Willy!

I want to tell you that Lara has started 2x500mg of acetyl-L carnitine by now foods September 5.
I hope this one gets more positive results than casasco carnitine.
Next cardio check up will be on September 24, I believe this time cardiologist will increase carvedilol ( last time Lara was with flu and bronchospasm, and wasn't a good moment).
Let's hope to see Lara's heart at least a little better.
She is getting more beautiful everyday!

I hope you are doing great.

Cheers

Aleta.

[Corrij (therapeut)]

hi Aleta,

Researchers reviewed 13 controlled trials and concluded that benefits of L-carnitine supplementation include reductions in all causes of mortality, angina symptoms and ventricular arrhythmias following a heart attack. The study acknowledged L-carnitine’s ability to stabilize heart cell membranes and improve compromised cellular energy metabolism.

But don`t expect miracles. Its about the interaction between all of her supplements.
She`s doing great so focus on that

greetings,
Corrij