Baby girl, dilated miocardyopathy from Argentina, need help
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
Hi Aleta,
I would suggest capsules of 30 mg and then 3 x 30 is 90 mg.
There is nothing to be scared of.
A number of studies have shown that the reduced form of Coenzyme Q10 (ubiquinol) may be more effective than the oxidized form (ubiquinone).
If it is very difficult for you to buy the ubiquinol then give her ubiquinone in the dose you already do.
Because she is so young her body is capable of converting CoQ10 from the oxidized to the reduced form. Do you agree Willy?
greetings,
Corrij
I would suggest capsules of 30 mg and then 3 x 30 is 90 mg.
There is nothing to be scared of.
A number of studies have shown that the reduced form of Coenzyme Q10 (ubiquinol) may be more effective than the oxidized form (ubiquinone).
If it is very difficult for you to buy the ubiquinol then give her ubiquinone in the dose you already do.
Because she is so young her body is capable of converting CoQ10 from the oxidized to the reduced form. Do you agree Willy?
greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.
will not have good health for enough time.
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Yes Corrij, the seller doesen´t have ubiquinol so is hard to get any, because everything we buy from outside Argentina, goes to custom offiece, is not imposible, but is a mess.
Anyway; last time we ask a family friend to bring us ribose from a trip, so we gonna ask him again, we need more ribose and D3, we´ll ask for acetyl carnitine and ubiquinol.
Cheers
Ale.
Anyway; last time we ask a family friend to bring us ribose from a trip, so we gonna ask him again, we need more ribose and D3, we´ll ask for acetyl carnitine and ubiquinol.
Cheers
Ale.
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Hi Willy and Corrij!
I{m about to buy supplementes, is this the right carnitine?
http://www.amazon.com/Foods-Acetyl-L-Ca ... ANow+Foods
and this one is a good product?
http://www.amazon.com/Life-Extension-Su ... inol+50+mg
or this one?
http://www.amazon.com/Best-Naturals-Ubi ... inol+50+mg
Cheers, have a great week!
Ale.
I{m about to buy supplementes, is this the right carnitine?
http://www.amazon.com/Foods-Acetyl-L-Ca ... ANow+Foods
and this one is a good product?
http://www.amazon.com/Life-Extension-Su ... inol+50+mg
or this one?
http://www.amazon.com/Best-Naturals-Ubi ... inol+50+mg
Cheers, have a great week!
Ale.
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
I will try to get one of the Dutch parents to join this discussion
Met vriendelijke groeten,
Willy Witsel
Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina
Willy Witsel
Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
Hi Aleta,
These products are fine,
greetings,
Corrij
These products are fine,
greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.
will not have good health for enough time.
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Thanks! I´ll ask for them now
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Hi
Emma is 14kg And gets
1x 100mg ubiquinol
And
1x50mg ubiquinol
This is high dose but we discussed since Emma's LV was Still large And slow improvement
The carnitine we now give Acetyl Carnitine
Its 588mg And we give one Every other day.
D ribose about 3gram
Ubiquinol And d ribose we have from healthy origins And the carnitine van docters best.
We buy them at www.iherb.com
Good products And good prices even with shipping from USA.
Hope this helps
Best regards
Saskia
Emma is 14kg And gets
1x 100mg ubiquinol
And
1x50mg ubiquinol
This is high dose but we discussed since Emma's LV was Still large And slow improvement
The carnitine we now give Acetyl Carnitine
Its 588mg And we give one Every other day.
D ribose about 3gram
Ubiquinol And d ribose we have from healthy origins And the carnitine van docters best.
We buy them at www.iherb.com
Good products And good prices even with shipping from USA.
Hope this helps
Best regards
Saskia
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Thank you Saskia!
I´ve brought acetyl L carnitine, ubiquinol, D-ribose, vitamine D3 from Now Foods, and ubiquinol 50mg best Naturals.
I hope they arrive soon!
Lara weighs 9,700 kg
L-Carnitine (from casasco lab) 500mg twice at day
Ubiquinone 150mg at day (pharmacy prepared)
D-ribose 2,70mg (Source Naturals) divided in 3 times at day
Magnasium 30mg twice at day
cheers
Ale.
I´ve brought acetyl L carnitine, ubiquinol, D-ribose, vitamine D3 from Now Foods, and ubiquinol 50mg best Naturals.
I hope they arrive soon!
Lara weighs 9,700 kg
L-Carnitine (from casasco lab) 500mg twice at day
Ubiquinone 150mg at day (pharmacy prepared)
D-ribose 2,70mg (Source Naturals) divided in 3 times at day
Magnasium 30mg twice at day
cheers
Ale.
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
Aleta what is the dosis of the acetyl carnitine?
We use 1500mg for an adult with 70kg = 21,5 mg / kg
For lara 21,5 x 10 = 215 mg per day, so every other day 1 x 500mg just like Emma
CHANGE PLAN
Only change the Q10 you bought 50 mg capsules, give here 2 x 50 per day, if you squeeze them always some of the Q10 stay behind so you will and up with the dosis Corrij suggested 90 mg
We wait until we see the results during the next lab tests.
For this kind of change we need BNP values, one value before the change and one after 4 months. If the values improve, we introduce acetyl
So do not start the new Q10 until you have the first BNP value!!!
Good plan? Corrij?
We use 1500mg for an adult with 70kg = 21,5 mg / kg
For lara 21,5 x 10 = 215 mg per day, so every other day 1 x 500mg just like Emma
CHANGE PLAN
Only change the Q10 you bought 50 mg capsules, give here 2 x 50 per day, if you squeeze them always some of the Q10 stay behind so you will and up with the dosis Corrij suggested 90 mg
We wait until we see the results during the next lab tests.
For this kind of change we need BNP values, one value before the change and one after 4 months. If the values improve, we introduce acetyl
So do not start the new Q10 until you have the first BNP value!!!
Good plan? Corrij?
Met vriendelijke groeten,
Willy Witsel
Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina
Willy Witsel
Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina
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- Verslaafd aan het forum
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- Lid geworden op: do mei 19, 2005 10:46 pm
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
oke
Those who do not have enough time for good health,
will not have good health for enough time.
will not have good health for enough time.
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Hi Willy and Corrij
Lara has the L carnitine from casasco labs, not acetyl yet.
Yesterday I order all the supplements but the person who bring it was on a plane coming back, so, we have to wait a month for him to come back to us and bring the order.
So, we have time to make the BNP test in the meantime
Thursday, cardiologist. aaaaaaaaaah
Thank you thank you thank you
Ale.
Lara has the L carnitine from casasco labs, not acetyl yet.
Yesterday I order all the supplements but the person who bring it was on a plane coming back, so, we have to wait a month for him to come back to us and bring the order.
So, we have time to make the BNP test in the meantime
Thursday, cardiologist. aaaaaaaaaah
Thank you thank you thank you
Ale.
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- Berichten: 14724
- Lid geworden op: di okt 09, 2001 3:00 am
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
Yes ask the cardio to do this for our CHANGE PLAN
Cardiologists are used to the fact that they have to do extra blood test is the change the medication
It is the same for us!
Cardiologists are used to the fact that they have to do extra blood test is the change the medication
It is the same for us!
Met vriendelijke groeten,
Willy Witsel
Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina
Willy Witsel
Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Ok, I'll let you know tomorrow how everything goes.
Aleta (little panic).
Aleta (little panic).
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- Verslaafd aan het forum
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- Lid geworden op: di okt 09, 2001 3:00 am
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
It is the end of my two months holiday, I am in a panic too
Met vriendelijke groeten,
Willy Witsel
Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina
Willy Witsel
Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina
Re: Baby girl, dilated miocardyopathy from Argentina, need help
HI, we came a while ago from cardiologist appointment.
Lara´s heart is stable, has a good HR, lungs clear, clinicly very good, and the doc was happy to know that Lara keeps growing in size and weigh, and is living life normal (only with a little fast breathing), and that we shoul let her do what she want, because with exersice she is making cardio rehabilitation.
Shortening fraction still the same 26%-28%
Mitral valve gradient lowed from 65mmgh to 55mmgh, but I don´t understand what that is.
About the atrium and ventricule are a liiiiiiitle smaller, but doc saids is because of the encrease of fursemide dose, (it became a little smaller when she encreased the fursemide) if we decrease the dose, the heart will be larger again
I´ll be positive and will think that the heart would be smaller anyway, can I?
We´ve asked about the BNP you want to see, she has no problem, but told us to do it in 15 days, in order to wait a whole month since we increased the enalapril, as we have to wait for the ubiquinol, I think there is no problem, right?
She said that we should do just BNP, NOT pro-BNP, and in the same lab, so we can compare. sounds good?
So this are the news, I´m so frustrated to see doctors and that nobody says "she is healing", BUT I´m very grateful that she at list is stable and growing into a beatiful little and smart girl
Regards,
Aleta.
Lara´s heart is stable, has a good HR, lungs clear, clinicly very good, and the doc was happy to know that Lara keeps growing in size and weigh, and is living life normal (only with a little fast breathing), and that we shoul let her do what she want, because with exersice she is making cardio rehabilitation.
Shortening fraction still the same 26%-28%
Mitral valve gradient lowed from 65mmgh to 55mmgh, but I don´t understand what that is.
About the atrium and ventricule are a liiiiiiitle smaller, but doc saids is because of the encrease of fursemide dose, (it became a little smaller when she encreased the fursemide) if we decrease the dose, the heart will be larger again
I´ll be positive and will think that the heart would be smaller anyway, can I?
We´ve asked about the BNP you want to see, she has no problem, but told us to do it in 15 days, in order to wait a whole month since we increased the enalapril, as we have to wait for the ubiquinol, I think there is no problem, right?
She said that we should do just BNP, NOT pro-BNP, and in the same lab, so we can compare. sounds good?
So this are the news, I´m so frustrated to see doctors and that nobody says "she is healing", BUT I´m very grateful that she at list is stable and growing into a beatiful little and smart girl
Regards,
Aleta.