Baby girl, dilated miocardyopathy from Argentina, need help
Re: Baby girl, dilated miocardyopathy from Aregentina, need
Lara is having 500mg of L carnitine each day, 250mg in the morning and 250 At night.
She catched our cold
She catched our cold
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
Oke thank you
Do not forget yhe 2 x 1000 IU vitamin D3 per week
Do not forget yhe 2 x 1000 IU vitamin D3 per week
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 Aregentina, need
Yes, I gave it today and last thusday.
Thank you!
Thank you!
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
I had a telephone meeting with Corrij yesterday, also about how to proceed with Lara
Lara was not critically ill. So clinical improvements are a bit difficult to see but they are there, but less obvious
We see here grow, gain wait and do more. Basically you can say she looks like a child of here age. That is excellent.
If we look at the diagnostics, bnp, ejf, mitral valve we see progress too.
The next phase would be that Lara is able to heal the non compaction issue. We have to wait and see.
Lara was not critically ill. So clinical improvements are a bit difficult to see but they are there, but less obvious
We see here grow, gain wait and do more. Basically you can say she looks like a child of here age. That is excellent.
If we look at the diagnostics, bnp, ejf, mitral valve we see progress too.
The next phase would be that Lara is able to heal the non compaction issue. We have to wait and see.
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
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
About the dosis she is using at the moment we have some suggestions using this formula
(Adult dosis / 70) x Lara kg
Lara has to overcome noncompaction therefore I take higher dosis
MAGNESIUM (200 - 400) / 70) x 8,3 = 24- 47 = 25 - 50 mg per day
At the moment Lara is almost at the end of the REF so 60 mg will be the max dosis for the moment
Diaree is a contra indication
L-CARNITINE (1980 / 70) x 8,3 = 234 = 300 mg per day
At the moment she gets from the metabolic docter 500 mg. I think this is safe and some parents of children in the Netherlands also use higher dosis then calculated.
At the moment Lara's blood value is double the max ref. I think this is not a problem but you can check this dosis with the metabolic docter
(Adult dosis / 70) x Lara kg
Lara has to overcome noncompaction therefore I take higher dosis
MAGNESIUM (200 - 400) / 70) x 8,3 = 24- 47 = 25 - 50 mg per day
At the moment Lara is almost at the end of the REF so 60 mg will be the max dosis for the moment
Diaree is a contra indication
L-CARNITINE (1980 / 70) x 8,3 = 234 = 300 mg per day
At the moment she gets from the metabolic docter 500 mg. I think this is safe and some parents of children in the Netherlands also use higher dosis then calculated.
At the moment Lara's blood value is double the max ref. I think this is not a problem but you can check this dosis with the metabolic docter
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
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
Q10
(200 - 400 / 70) x 8,3 = 24 - 47 = 25 - 50 mg oil based Q10
Q10 is extremely save and the max dosis for Lara is 145 mg oil based Q10. Emma is getting 150 mg from Saskia. We think that is a little bit to much.
The metabolic docter prescibes 150 mg powder. This is less bioactive. Corrij thinks 40% less active and I think 80% less active
Ask the metabolic docter if he thinks that 150 mg is still the rigth dosis for Lara.
(200 - 400 / 70) x 8,3 = 24 - 47 = 25 - 50 mg oil based Q10
Q10 is extremely save and the max dosis for Lara is 145 mg oil based Q10. Emma is getting 150 mg from Saskia. We think that is a little bit to much.
The metabolic docter prescibes 150 mg powder. This is less bioactive. Corrij thinks 40% less active and I think 80% less active
Ask the metabolic docter if he thinks that 150 mg is still the rigth dosis for Lara.
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
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
D-RIBOSE
(15 / 70) x 8,3 = 1,778 gram = 2 gram per day
More is not necessary
(15 / 70) x 8,3 = 1,778 gram = 2 gram per day
More is not necessary
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 Aregentina, need
Hi Willy and Corrij!
Thank you so much for care about Lara!
Lara is with a cold now, she has a lot of mocus wich she swallows, so I would raise up the magnesium when the cold is over, because if the mocus get her diaree, we will not know if was the mocus or the magnesium as the last time. is that ok?
About the Qo10 I know Emma is getting a lot, but she had an amazing improve, the las cardiology check was very good. We still have to talk with the doctor, she is not so friendly about answer emails
The non compacted ventricule: almost every doctors agrees that the non compaction can improve a little, have a few less trabeculations but always be there. But the truth is that still there is not to much knowledge about it. some say that this come from utero but others don´t, as the pediatrician fo example. But they agree that she could live a long life with no complications with that ventricule non compacted, the big worry for what I know is the mitral valve, the EF, and the dilatated part.
The dilatation at the moment, since 7 month today from diagnosis haven´t grown, the measures are the same, and in the last echo was 3 or/4 mm less than the other. But the cardiologist didn´t give to much importance, I believe she is focused in mitral valve and distolic function wich is very reduced. The mitral valve today has %70 of deficiency, wich at first was %90.
But I belive is important that the dilatated part of the heart wasen´t grown, because the rest of her heart has to be bigger by now, right? and if is more contractible maybe is not just carvedilol helping, maybe is new tissue working, hank to all the energy the supplements provide. Am i right?
If you want to I´ll send you the last report with sizes an information.
we´ll try too reach the metabolic doctor today, I think she is in the hospital, and let you know.
If she thinks the 150mg of Qo10 are right (in powder), it´s a good Idea give Lara a little more in soft gel?
Regards,
Aleta.
Thank you so much for care about Lara!
Lara is with a cold now, she has a lot of mocus wich she swallows, so I would raise up the magnesium when the cold is over, because if the mocus get her diaree, we will not know if was the mocus or the magnesium as the last time. is that ok?
About the Qo10 I know Emma is getting a lot, but she had an amazing improve, the las cardiology check was very good. We still have to talk with the doctor, she is not so friendly about answer emails
The non compacted ventricule: almost every doctors agrees that the non compaction can improve a little, have a few less trabeculations but always be there. But the truth is that still there is not to much knowledge about it. some say that this come from utero but others don´t, as the pediatrician fo example. But they agree that she could live a long life with no complications with that ventricule non compacted, the big worry for what I know is the mitral valve, the EF, and the dilatated part.
The dilatation at the moment, since 7 month today from diagnosis haven´t grown, the measures are the same, and in the last echo was 3 or/4 mm less than the other. But the cardiologist didn´t give to much importance, I believe she is focused in mitral valve and distolic function wich is very reduced. The mitral valve today has %70 of deficiency, wich at first was %90.
But I belive is important that the dilatated part of the heart wasen´t grown, because the rest of her heart has to be bigger by now, right? and if is more contractible maybe is not just carvedilol helping, maybe is new tissue working, hank to all the energy the supplements provide. Am i right?
If you want to I´ll send you the last report with sizes an information.
we´ll try too reach the metabolic doctor today, I think she is in the hospital, and let you know.
If she thinks the 150mg of Qo10 are right (in powder), it´s a good Idea give Lara a little more in soft gel?
Regards,
Aleta.
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
No if 150 mg powder is still the right dosis keep it this way.
Never change a winning team
We will review the supplements again if she does not improve any more. But I expect we are on the right track.
SO DO NOT PANNIC bit enjoy coughing and sneezing Lara
Sometimes children "grow out of" the dilitation.
Never change a winning team
We will review the supplements again if she does not improve any more. But I expect we are on the right track.
SO DO NOT PANNIC bit enjoy coughing and sneezing Lara
Sometimes children "grow out of" the dilitation.
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 Aregentina, need
ok, I was in panic but I´m better now
I was about to find a pharmacy that can prepare the Qo10 capsules with ubiquinol, not ubiquinone like now. is not a good idea?
I was talking yesterday with a pharmacist, and he told me that often they prepare Qo10 with the one they got depending on the market (ubiquinol or ubiquinone), so I wanna track wich pharmacys got ubiquinol to prepare.
The metabolic doctor answer the mail! she said that the test was ok, and she will see us next week to give us a certificate of the meds she is prescibing Lara, for the health care. So I guess the doses will be the same, she didn´t mentioned nothing about it.
so, try to find ubiquinol?
Cheers
Aleta.
I was about to find a pharmacy that can prepare the Qo10 capsules with ubiquinol, not ubiquinone like now. is not a good idea?
I was talking yesterday with a pharmacist, and he told me that often they prepare Qo10 with the one they got depending on the market (ubiquinol or ubiquinone), so I wanna track wich pharmacys got ubiquinol to prepare.
The metabolic doctor answer the mail! she said that the test was ok, and she will see us next week to give us a certificate of the meds she is prescibing Lara, for the health care. So I guess the doses will be the same, she didn´t mentioned nothing about it.
so, try to find ubiquinol?
Cheers
Aleta.
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
No not now
The metabolic docter does a good job with subscribing Q10 and carnitine although laboratory tests tell here that this is not necessay in Lara's case
Lara is improving, we do not need to change, there are no critical issues.
We stay on this course, I am a sailor
See this video when we had an engine failure on the middle of the sea
You hear my voice and see my wife cora
https://m.youtube.com/watch?v=FuhTFMD6yDs
The metabolic docter does a good job with subscribing Q10 and carnitine although laboratory tests tell here that this is not necessay in Lara's case
Lara is improving, we do not need to change, there are no critical issues.
We stay on this course, I am a sailor
See this video when we had an engine failure on the middle of the sea
You hear my voice and see my wife cora
https://m.youtube.com/watch?v=FuhTFMD6yDs
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 Aregentina, need
you have an engine problem in the middle of the sea, and you sound so calm, wow!
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
But Cora was not
I said to here
Do you want to say somthing in this movie to our audience
And she said
NO I am not in a very good mood today.....
And then we had to sail 11 hours to the nearest habour
I said to here
Do you want to say somthing in this movie to our audience
And she said
NO I am not in a very good mood today.....
And then we had to sail 11 hours to the nearest habour
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
-
- Verslaafd aan het forum
- Berichten: 14722
- Lid geworden op: di okt 09, 2001 3:00 am
- Locatie: Exloo
- Contacteer:
Re: Baby girl, dilated miocardyopathy from Aregentina, need
This is an other hobby, rockets
You hear my voice https://m.youtube.com/watch?v=Ail9ujdwiGA
And this is my youtube channel https://m.youtube.com/user/wwitsel
You hear my voice https://m.youtube.com/watch?v=Ail9ujdwiGA
And this is my youtube channel https://m.youtube.com/user/wwitsel
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 Aregentina, need
You are a fun guy!!!
this is what I love to do, and lucky for me, what I do for living:
https://www.facebook.com/aleta.vidal/me ... 174&type=3
and this is what Sebastian does too:
https://www.facebook.com/sebastianpablo ... 443&type=3
My hobbie is roller skate and collect comics, when I´m in panic I hug my childrens or do one of those things
Thanks for share this!
this is what I love to do, and lucky for me, what I do for living:
https://www.facebook.com/aleta.vidal/me ... 174&type=3
and this is what Sebastian does too:
https://www.facebook.com/sebastianpablo ... 443&type=3
My hobbie is roller skate and collect comics, when I´m in panic I hug my childrens or do one of those things
Thanks for share this!