Baby girl, dilated miocardyopathy from Argentina, need help
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
In my opinion you do not have to increase the dosis
Corrij?
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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Re: Baby girl, dilated miocardyopathy from Argentina, need help
Hi Aleta,
I wouldn`t change it yet.
A adult takes 1500-2000 mg a day, so 1000 mg a day for a child with her weight is enough at this moment,
greetings,
Corrij
I wouldn`t change it yet.
A adult takes 1500-2000 mg a day, so 1000 mg a day for a child with her weight is enough at this moment,
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
Hi!
Then we are ok with all suppements. I hope to see Lara improve more.
Thank you so much for your advise, you are so awesome.
Next cardiologist appointment is at June 2.
have a great week!
Aleta.
Then we are ok with all suppements. I hope to see Lara improve more.
Thank you so much for your advise, you are so awesome.
Next cardiologist appointment is at June 2.
have a great week!
Aleta.
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
I missed this conversation, something is wrong with the forum I do nog get a notification email
I agree with Corrij the carnitine is enough for the moment.
Carnitine is very save for children so 1000 mg will not cause problems
Sometimes it causes diaree.
I agree with Corrij the carnitine is enough for the moment.
Carnitine is very save for children so 1000 mg will not cause problems
Sometimes it causes diaree.
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 Corrij and Willy! We haven't spoke in a while, so I hohpe you to are doing great.
Lara had her check up with the cardiologist yesterday.
This time her SF numbers are the same than the last check up, two months ago (SF 28-32%), a little below the normal range. I was hoping be inside the normal this time but I'm honna have to be more patient.
What is 2mm smaller is her ventricule
Lara is been growing (11.900kg, 89cm tall) and the dilated part of the heart doesn't, which is great and I'm so grateful for that, she have to keep it this way!
Doc made the Z-score, june 2015 was DDVI Z-score +5, and DSVI Z-score +7.2, and now is: DDVI Z-score +4 and DSVI Z score +4,1. So, Z score is getting better and even, which speaks of a better function.
Doc told us that we have to take care of Lara from virus and stuf, but she can do a normal lfe like any othr kid, she even can skate with me! And next year start kindergarden!
I'm grateful and frustrated at the time, I can't wait for see her inside the normal range of SF, also I'm scare that she don't get anymore improvement on that![:(](./images/smilies/icon_frown.gif)
But I know a year ago, things were very diferent and this is like a miracle, Lara is growing strong and beautiful and things seems like normal around here.
I hope I can do more to help Lara improve but I get I'll have to wait and go with her flow.
Best and warmest regards.
Aleta.
Lara had her check up with the cardiologist yesterday.
This time her SF numbers are the same than the last check up, two months ago (SF 28-32%), a little below the normal range. I was hoping be inside the normal this time but I'm honna have to be more patient.
![:cry:](./images/smilies/icon_cry.gif)
What is 2mm smaller is her ventricule
![:)](./images/smilies/icon_smile.gif)
Doc made the Z-score, june 2015 was DDVI Z-score +5, and DSVI Z-score +7.2, and now is: DDVI Z-score +4 and DSVI Z score +4,1. So, Z score is getting better and even, which speaks of a better function.
Doc told us that we have to take care of Lara from virus and stuf, but she can do a normal lfe like any othr kid, she even can skate with me! And next year start kindergarden!
I'm grateful and frustrated at the time, I can't wait for see her inside the normal range of SF, also I'm scare that she don't get anymore improvement on that
![:(](./images/smilies/icon_frown.gif)
But I know a year ago, things were very diferent and this is like a miracle, Lara is growing strong and beautiful and things seems like normal around here.
I hope I can do more to help Lara improve but I get I'll have to wait and go with her flow.
Best and warmest regards.
Aleta.
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
Thank you for the update.
Be patient, that is the best attitude here. So I was right, Lara will outgrow here condition
Here body grows but her heart stays the same size
Still a lot of good news in your message!!
The only thing that stayed the same is SF, not bad not bad at all
Be patient, that is the best attitude here. So I was right, Lara will outgrow here condition
Here body grows but her heart stays the same size
Still a lot of good news in your message!!
The only thing that stayed the same is SF, not bad not bad at all
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 Willy!
Yes, there are some good news, I hope the good ones keep coming!
I say thanks for have found you (via Saskia, of course), every day![:)](./images/smilies/icon_smile.gif)
Lara's weigh is 12kg, is having 1/3 of a jigsaw tablet in the morning and 1/3 at night. Is that enough for her?
Did I told you that she does not wear diapers anymore? only at nigh for sleep. And she takes two diuretics! I'm so proud of that little-growing girl.
As always, thank you for be there
Cheers and hugs,
Aleta.
Yes, there are some good news, I hope the good ones keep coming!
I say thanks for have found you (via Saskia, of course), every day
![:)](./images/smilies/icon_smile.gif)
Lara's weigh is 12kg, is having 1/3 of a jigsaw tablet in the morning and 1/3 at night. Is that enough for her?
Did I told you that she does not wear diapers anymore? only at nigh for sleep. And she takes two diuretics! I'm so proud of that little-growing girl.
As always, thank you for be there
Cheers and hugs,
Aleta.
Re: Baby girl, dilated miocardyopathy from Argentina, need help
Hi Willy and Corrij, I hope you are doing great.
I have a question that you might know the answer. In the parents group where I met Saskia, a mom found a conection between the rotavirus vaccine and DCM, is that possible???
Lara is doing great, has a cold but she is a ninja girl![:)](./images/smilies/icon_smile.gif)
When you have time, cand you send me (again, so sorry) the relation weigh/supplements? I'm not sure if we have to encrease something, she hit the 12KG![:)](./images/smilies/icon_smile.gif)
Besides that, I wanted to check if you are ok, we don't talk for a while.
Warmest regards
Aleta.
I have a question that you might know the answer. In the parents group where I met Saskia, a mom found a conection between the rotavirus vaccine and DCM, is that possible???
Lara is doing great, has a cold but she is a ninja girl
![:)](./images/smilies/icon_smile.gif)
When you have time, cand you send me (again, so sorry) the relation weigh/supplements? I'm not sure if we have to encrease something, she hit the 12KG
![:)](./images/smilies/icon_smile.gif)
Besides that, I wanted to check if you are ok, we don't talk for a while.
Warmest regards
Aleta.
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
This is the first day I am realy feeling well!!
Reduced my medication because it had extremely bad side effects
I hope it stays like this
Reduced my medication because it had extremely bad side effects
I hope it stays like this
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: di okt 09, 2001 3:00 am
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
I looked it up in PubMed
http://www.ncbi.nlm.nih.gov/pubmed/?ter ... iomyopathy
Their conclusion
However, making general assumptions and drawing conclusions about vaccinations causing deaths based on spontaneous reports to VAERS - some of which might be anecdotal or second-hand - or from case reports in the media, is not a scientifically valid practice.
I would say it might be possible but not enough research
http://www.ncbi.nlm.nih.gov/pubmed/?ter ... iomyopathy
Their conclusion
However, making general assumptions and drawing conclusions about vaccinations causing deaths based on spontaneous reports to VAERS - some of which might be anecdotal or second-hand - or from case reports in the media, is not a scientifically valid practice.
I would say it might be possible but not enough research
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: di okt 09, 2001 3:00 am
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Re: Baby girl, dilated miocardyopathy from Argentina, need help
For the calculations you have to read back on the forum and if you find the right post then click on QUOTE to bring it to the front of this message thread. Do so for all calculations
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
This is for Qo10
Willy schreef:This is the FIRST TIME EVER in my experience that a docter gives Q10 and carnitine for this condition
EXCELLENT
The q10 dosis is high as saskia explained already. But Q10 is extremely safe so do not worry
What kind of Q10 is she giving to your child? Can you ask that?
This is how you calculate the dosis if you use standard over the counter supplements
For an adult 200 - 400 mg is fine. If he weighs 70 kg that means
2,85 - 5,71 mg / kg now you can calculate the dosis for your child
What is her weigh in KG?
How much miligram carnitine is 2,5 ml ??
Re: Baby girl, dilated miocardyopathy from Aregentina, need
For Carnitine:
Willy schreef:I do not understand de carnitine dosis because I do not understand what you wrote about it
A 70 kg adult will get 3 x 2 x 330 mg = 1980 mg per day
That is 282 mg carnitine / kg
So 300 mg carnitine / kg is fine and I would not argue with the doctor if the dosis is higher
But NOT LOWER then 300mg carnitine / kg weight
Because carnitine is as Q10 extremely safe
Now you have to calculate the per day dosis for your dougther based on her weight
HOW MUCH does your doughter weigh at the moment in kilograms
OTHER PARENTS READING THIS PLEASE HELP
Re: Baby girl, dilated miocardyopathy from Aregentina, need
For Magnesium
Willy schreef:I advise 200 - 400 mg magnesium to an adult like me 70 kg
That means 2,9 - 5,7 mg / kg / day
Lara is at the moment around 8 kg tha dosis for her is
22,8 - 45,7 mg / day
So a dosis between 30 - 50 mg is fine per day. That means 2 x (15 - 25) mg because it is better to devide the daily doses.
The magnesium should be binded too an amino acid for optimal absorbtion (bio availability)
So for instance magnesium citrate is good
Sometimes doctors subscribe magnesium oxide. DO NOT USE THIS FORMULAE
This will not be absorbed
Magnesium sometimes gives diaree after a week or so. In that case you should take 50 % of the doses
Re: Baby girl, dilated miocardyopathy from Aregentina, need
Finally! Robose. Looking for all of this and reading, I was thinking about the BIG help you are giving us and how supportive you are, specially in the diagnosis first times. THANK YOU SO MUCH!!!
Willy schreef:For an adult with 70 kg the ribose doses is 12 gram
12 / 70 = 0,17 gram
For Lara with 8 kg
0,17 x 8 = 1,37 gram
Divided in 3 times per day
1,37 / 3 = 0,45 gram
So the correct dosis is 3 x 0,45 gram per day
But start with 1 x 0,45 gram per day and slowly bring that up to 3 x