Re: Re: Attn: Carnitine Paper// Update/Sweating & Clammy!

[Guest guest]

Happy birthday matthew, 10 is so grown up, and I am so happy for you

both that you are down to 1 seizure. My older daughter just turned 10

too, they are growing up so fast. Any way, from what Stella's doc has

told me, the sweaty clammy comes from their muscles contracting so

hard, they are burning lots of calories when they seize (TC's I'm

assuming when you say this) that it is the bodies natural reaction to

the heart rate being faster and the lactic acid build up from using

their muscles (all the tensing etc) stella gets really hot and clammy

too, then she gets the goose bumps and shivers once she has stopped.

amanda

On Thursday, September 9, 2004, at 10:31 AM, ketomum68 wrote:

> and All,

>

> Could you send the carnitine paper through to me as well please! 

> Thanks .  I stopped giving carnitine a couple of weeks

> ago when I was going through that second YUK patch with him.  Have

> not introduced it back yet but he is not showing any signs of being

> deficient at the moment - will wait until he gets tested again.

>

> Matt now 10 years old (birthday yesterday!!!) and so far (tempting

> fate AGAIN!) he has had a brilliant week - the best in along time. 

> However, I still can't get rid of that 10pm seizure - albeit for one

> night when he decided to have a seizure at 6am instead!  It seems to

> be one or the other with him at the moment - can't lock down the

> reason why though - so at the moment it is 1 per night - they have

> got less intense but I am still working on getting rid of the damned

> thing!

>

> The sweating and clammy issue - still trying to look into this one as

> well and find out why!  Apparently you get sweaty and clammy when the

> metabolisim has speeded up - maybe when some of our kids are getting

> sweaty and clammy it is related to their metabolism running at a fast

> rate - I don't know but this is the latest bit I am researching into

> at the moment - just thought I would share!

>

> Love to everyone.

>

> Emma - Mum to .

>

>

> -- In ketogenic , " & Hill "

> wrote:

> >   We have just now got back from 's follow up endo appt this

> morn actually , where his carnitine issue came up - they

> basically went thru all his abnormal bloods, and carnitine is his

> most 'out there' result, (last level was done in July) so he

> discussed it a fair bit. I can't recall his exact levels, will have a

> dig later and post them to compare.

> >   He examined v thoroughly, and agreed with me, no pressing

> need in his opinion to supplement him, he is non-symptomatic except

> for the slow growth issue - which he believes with is more a

> combination of things, ie - poss carn def, poss zinc def, topomax,

> mild chronic acidosis, prolonged state of ketosis, and the list goes

> on....

> >   He said yes, supplementing with carnitine, zinc, and adding some

> bicarb to combat the acidity may all help his growth rate improve,

> but except for the zinc (which he thinks isn't really that big a deal

> growth wise anyway), these measures have previously resulted in

> seizures break through or increase with , and basically

> priority wise - continued seizure freedom was at the top of the list.

> Maybe if we reach the 12 mth seizure free mark we will start playing

> around a bit in late Dec. Gulp.

> >   Soooo, on we plod knowing that overall has some deficiency

> issues, but no one is keen on upsetting the seizure freedom status

> quo. He may be fine right now even if we made those changes, who

> knows, but.....

> >

> >   Anyways....It does sound to me from 's symptoms though,

> like it would be maybe worth trying him on some carnitine - Dr

> Freeman recommends supplementing for a month to see if there is any

> clinical improvement, and yes, did react badly to it, but - he

> reacts excessively to most things (!!) so don't let that put you off

> toooo much

> >   If you see any signs at all of an adverse reaction, well, pull

> the plug sooner rather than later, at least you will then know that

> it has to be crossed off the list for the future. And yes - on the

> other hand, it may well be his answer, the last piece of the puzzle

> so to speak. If not, well then, onwards to other measures...

> >   Starting slowly and incrementing up every 2-3 days to reach

> between 50 and 100 mgs per kg per day is the usual recommendation, it

> took us 2 weeks to get to a 'theraputic' level of 50 mgs per kg with

> , but when his follow up levels came back after we pulled the

> plug on it, he had overshot the mark, hugely over the top in all

> areas on the profile. This is not supposed to do any harm, just gets

> termed 'expensive urine', in other words what the body doesn't need,

> it just gets peed out, but it was still a shock to see how high he

> had actually got.

> >   Re the cal/ratio issue, if you are going to try the carnitne, I

> really would not alter anything else till after it is in the

> theraputic range. If does have an issue with efficent fat

> metabolism due to a carnitine deficiency, and the

> supplementing 'fixes' that, then you might see a marked difference in

> quite a few areas. 's cal intake for example, I believe was far

> too low for when everything started 'speeding up', and carn is known

> as a 'fat busting' supplement, allowing easier burning of body fat

> etc - meaning that you may have to reverse back any changes you were

> about to make now.

> >   Depends though on which way you want to go first - see if you can

> fix things with carnitine, or see if by altering his diet you can get

> away with not supplementing...

> >   It can take a fair while for carnitine issues to show on the diet

> from what I can gather - I know that was fine for his first yr

> or so, but after time it seemed to start having an effect, a bit

> different with us though because of the depakote being included in

> the equation.

> >   If it were me, I think I would keep things as is and see if

> adding carn makes a positive difference, in weight, height, energy

> and seizure control. Any seizure increase, ditch immediately, any

> improvement, keep on incrementing up till you feel he is in the right

> place clinically, and get follow up bloods to compare to his last

> levels. Any huge increase in ketones has to be watched for - like

> either from increased body fat buring or from burning thru caloric

> fat more efficiently, so keep a v close eye on his weight too.

> >   I'll send you thru a paper on carnitine and the diet that I have

> here that sets out how that ratio is determined when a carn profile

> is done, at least you'll have it for the next time he is tested.

> >

> >  

> >

> >     ----- Original Message -----

> >     From: michelle paulson

> >

> >

> >     Hi -

> >     Boy, you qualify as an " expert " to me - Thank you for

> >     all that info!  Wish I would have consulted w/you

> >     instead of my neuro b/c my neuro only requested a

> >     " carnitine level " instead of " profile " which means I

> >     only got one number.  What a waste of time.  Pisses me

> >     off, actually, and will ask her why she didn't order a

> >     profile when she finally decides to call about the low

> >     number in the first place.

> >

> >     Two things - one - was reading that if it is a true

> >     primary deficiency, red flags would have been raised

> >     at his biochemical screening test when initiating the

> >     diet one year ago.  Apparently highly elevated

> >     dicarboxylic acids in the urine signal a problem w/the

> >     normal pathway of metabolism. All tests came back

> >     perfect at that time.   Plus, looking back - had a

> >     " profile " done in March of this past year and they

> >     were OK.  So... something has happened since then.

> >     Probably has something to do w/me taking away animal

> >     fat/protein the past 3 months.  He hasn't ingested any

> >     food to produce it though, I guess his body could have

> >     endogenously been producing.  If anything - a

> >     secondary deficiency due to the diet but still

> >     interfering w/his body being able to burn fat.

> >     Troubling. 

> >

> >     He certainly has the symptoms - mainly hypotonia and

> >     uncoordination but it's definitely gotten worst.

> >     Defintely has slowed down ht. wise and has gained

> >     weight.  Nothing else " stands out " . 

> >

> >     He has gained over a lb. in the past month with no

> >     recent growth in height.  My soon-to-be new

> >     nutritionist has not met him yet but got his paperwork

> >     and called to tell me she figured him to be in the

> >     980-1030 cal. range (he's at 1080 now) w/16.8g protein

> >     (he's currently getting 19g/day).  So, we are in the

> >     ball park but I may need to do some adjusting there to

> >     compensate for this recent weight gain.  We meet w/her

> >     Sept. 30 so I don't know if I should sit tight until

> >     then or reduce one or both (cals/protein) before we

> >     meet.  Any suggestions?

> >

> >     So, had problems on carnitine, huh?  I've

> >     certainly read that it is common so that's why I'm

> >     scared although it would certainly be nice to be on

> >     the opposite end and see those last seizures disappear

> >     w/regained strength.  He used to be my strongest kid.

> >

> >     MANY thanks, , our resident expert on nearly all

> >     aspects of this diet - sure is a bummer that you don't

> >     get paid the bookoo bucks that some of our incompetent

> >     Dr.s do to figure things out.

> >

> >     (mom to )

> >

> >

> >

> >

> >

[Guest guest]

Happy birthday matthew, 10 is so grown up, and I am so happy for you

both that you are down to 1 seizure. My older daughter just turned 10

too, they are growing up so fast. Any way, from what Stella's doc has

told me, the sweaty clammy comes from their muscles contracting so

hard, they are burning lots of calories when they seize (TC's I'm

assuming when you say this) that it is the bodies natural reaction to

the heart rate being faster and the lactic acid build up from using

their muscles (all the tensing etc) stella gets really hot and clammy

too, then she gets the goose bumps and shivers once she has stopped.

amanda

On Thursday, September 9, 2004, at 10:31 AM, ketomum68 wrote:

> and All,

>

> Could you send the carnitine paper through to me as well please! 

> Thanks .  I stopped giving carnitine a couple of weeks

> ago when I was going through that second YUK patch with him.  Have

> not introduced it back yet but he is not showing any signs of being

> deficient at the moment - will wait until he gets tested again.

>

> Matt now 10 years old (birthday yesterday!!!) and so far (tempting

> fate AGAIN!) he has had a brilliant week - the best in along time. 

> However, I still can't get rid of that 10pm seizure - albeit for one

> night when he decided to have a seizure at 6am instead!  It seems to

> be one or the other with him at the moment - can't lock down the

> reason why though - so at the moment it is 1 per night - they have

> got less intense but I am still working on getting rid of the damned

> thing!

>

> The sweating and clammy issue - still trying to look into this one as

> well and find out why!  Apparently you get sweaty and clammy when the

> metabolisim has speeded up - maybe when some of our kids are getting

> sweaty and clammy it is related to their metabolism running at a fast

> rate - I don't know but this is the latest bit I am researching into

> at the moment - just thought I would share!

>

> Love to everyone.

>

> Emma - Mum to .

>

>

> -- In ketogenic , " & Hill "

> wrote:

> >   We have just now got back from 's follow up endo appt this

> morn actually , where his carnitine issue came up - they

> basically went thru all his abnormal bloods, and carnitine is his

> most 'out there' result, (last level was done in July) so he

> discussed it a fair bit. I can't recall his exact levels, will have a

> dig later and post them to compare.

> >   He examined v thoroughly, and agreed with me, no pressing

> need in his opinion to supplement him, he is non-symptomatic except

> for the slow growth issue - which he believes with is more a

> combination of things, ie - poss carn def, poss zinc def, topomax,

> mild chronic acidosis, prolonged state of ketosis, and the list goes

> on....

> >   He said yes, supplementing with carnitine, zinc, and adding some

> bicarb to combat the acidity may all help his growth rate improve,

> but except for the zinc (which he thinks isn't really that big a deal

> growth wise anyway), these measures have previously resulted in

> seizures break through or increase with , and basically

> priority wise - continued seizure freedom was at the top of the list.

> Maybe if we reach the 12 mth seizure free mark we will start playing

> around a bit in late Dec. Gulp.

> >   Soooo, on we plod knowing that overall has some deficiency

> issues, but no one is keen on upsetting the seizure freedom status

> quo. He may be fine right now even if we made those changes, who

> knows, but.....

> >

> >   Anyways....It does sound to me from 's symptoms though,

> like it would be maybe worth trying him on some carnitine - Dr

> Freeman recommends supplementing for a month to see if there is any

> clinical improvement, and yes, did react badly to it, but - he

> reacts excessively to most things (!!) so don't let that put you off

> toooo much

> >   If you see any signs at all of an adverse reaction, well, pull

> the plug sooner rather than later, at least you will then know that

> it has to be crossed off the list for the future. And yes - on the

> other hand, it may well be his answer, the last piece of the puzzle

> so to speak. If not, well then, onwards to other measures...

> >   Starting slowly and incrementing up every 2-3 days to reach

> between 50 and 100 mgs per kg per day is the usual recommendation, it

> took us 2 weeks to get to a 'theraputic' level of 50 mgs per kg with

> , but when his follow up levels came back after we pulled the

> plug on it, he had overshot the mark, hugely over the top in all

> areas on the profile. This is not supposed to do any harm, just gets

> termed 'expensive urine', in other words what the body doesn't need,

> it just gets peed out, but it was still a shock to see how high he

> had actually got.

> >   Re the cal/ratio issue, if you are going to try the carnitne, I

> really would not alter anything else till after it is in the

> theraputic range. If does have an issue with efficent fat

> metabolism due to a carnitine deficiency, and the

> supplementing 'fixes' that, then you might see a marked difference in

> quite a few areas. 's cal intake for example, I believe was far

> too low for when everything started 'speeding up', and carn is known

> as a 'fat busting' supplement, allowing easier burning of body fat

> etc - meaning that you may have to reverse back any changes you were

> about to make now.

> >   Depends though on which way you want to go first - see if you can

> fix things with carnitine, or see if by altering his diet you can get

> away with not supplementing...

> >   It can take a fair while for carnitine issues to show on the diet

> from what I can gather - I know that was fine for his first yr

> or so, but after time it seemed to start having an effect, a bit

> different with us though because of the depakote being included in

> the equation.

> >   If it were me, I think I would keep things as is and see if

> adding carn makes a positive difference, in weight, height, energy

> and seizure control. Any seizure increase, ditch immediately, any

> improvement, keep on incrementing up till you feel he is in the right

> place clinically, and get follow up bloods to compare to his last

> levels. Any huge increase in ketones has to be watched for - like

> either from increased body fat buring or from burning thru caloric

> fat more efficiently, so keep a v close eye on his weight too.

> >   I'll send you thru a paper on carnitine and the diet that I have

> here that sets out how that ratio is determined when a carn profile

> is done, at least you'll have it for the next time he is tested.

> >

> >  

> >

> >     ----- Original Message -----

> >     From: michelle paulson

> >

> >

> >     Hi -

> >     Boy, you qualify as an " expert " to me - Thank you for

> >     all that info!  Wish I would have consulted w/you

> >     instead of my neuro b/c my neuro only requested a

> >     " carnitine level " instead of " profile " which means I

> >     only got one number.  What a waste of time.  Pisses me

> >     off, actually, and will ask her why she didn't order a

> >     profile when she finally decides to call about the low

> >     number in the first place.

> >

> >     Two things - one - was reading that if it is a true

> >     primary deficiency, red flags would have been raised

> >     at his biochemical screening test when initiating the

> >     diet one year ago.  Apparently highly elevated

> >     dicarboxylic acids in the urine signal a problem w/the

> >     normal pathway of metabolism. All tests came back

> >     perfect at that time.   Plus, looking back - had a

> >     " profile " done in March of this past year and they

> >     were OK.  So... something has happened since then.

> >     Probably has something to do w/me taking away animal

> >     fat/protein the past 3 months.  He hasn't ingested any

> >     food to produce it though, I guess his body could have

> >     endogenously been producing.  If anything - a

> >     secondary deficiency due to the diet but still

> >     interfering w/his body being able to burn fat.

> >     Troubling. 

> >

> >     He certainly has the symptoms - mainly hypotonia and

> >     uncoordination but it's definitely gotten worst.

> >     Defintely has slowed down ht. wise and has gained

> >     weight.  Nothing else " stands out " . 

> >

> >     He has gained over a lb. in the past month with no

> >     recent growth in height.  My soon-to-be new

> >     nutritionist has not met him yet but got his paperwork

> >     and called to tell me she figured him to be in the

> >     980-1030 cal. range (he's at 1080 now) w/16.8g protein

> >     (he's currently getting 19g/day).  So, we are in the

> >     ball park but I may need to do some adjusting there to

> >     compensate for this recent weight gain.  We meet w/her

> >     Sept. 30 so I don't know if I should sit tight until

> >     then or reduce one or both (cals/protein) before we

> >     meet.  Any suggestions?

> >

> >     So, had problems on carnitine, huh?  I've

> >     certainly read that it is common so that's why I'm

> >     scared although it would certainly be nice to be on

> >     the opposite end and see those last seizures disappear

> >     w/regained strength.  He used to be my strongest kid.

> >

> >     MANY thanks, , our resident expert on nearly all

> >     aspects of this diet - sure is a bummer that you don't

> >     get paid the bookoo bucks that some of our incompetent

> >     Dr.s do to figure things out.

> >

> >     (mom to )

> >

> >

> >

> >

> >

[Guest guest]

Happy birthday matthew, 10 is so grown up, and I am so happy for you

both that you are down to 1 seizure. My older daughter just turned 10

too, they are growing up so fast. Any way, from what Stella's doc has

told me, the sweaty clammy comes from their muscles contracting so

hard, they are burning lots of calories when they seize (TC's I'm

assuming when you say this) that it is the bodies natural reaction to

the heart rate being faster and the lactic acid build up from using

their muscles (all the tensing etc) stella gets really hot and clammy

too, then she gets the goose bumps and shivers once she has stopped.

amanda

On Thursday, September 9, 2004, at 10:31 AM, ketomum68 wrote:

> and All,

>

> Could you send the carnitine paper through to me as well please! 

> Thanks .  I stopped giving carnitine a couple of weeks

> ago when I was going through that second YUK patch with him.  Have

> not introduced it back yet but he is not showing any signs of being

> deficient at the moment - will wait until he gets tested again.

>

> Matt now 10 years old (birthday yesterday!!!) and so far (tempting

> fate AGAIN!) he has had a brilliant week - the best in along time. 

> However, I still can't get rid of that 10pm seizure - albeit for one

> night when he decided to have a seizure at 6am instead!  It seems to

> be one or the other with him at the moment - can't lock down the

> reason why though - so at the moment it is 1 per night - they have

> got less intense but I am still working on getting rid of the damned

> thing!

>

> The sweating and clammy issue - still trying to look into this one as

> well and find out why!  Apparently you get sweaty and clammy when the

> metabolisim has speeded up - maybe when some of our kids are getting

> sweaty and clammy it is related to their metabolism running at a fast

> rate - I don't know but this is the latest bit I am researching into

> at the moment - just thought I would share!

>

> Love to everyone.

>

> Emma - Mum to .

>

>

> -- In ketogenic , " & Hill "

> wrote:

> >   We have just now got back from 's follow up endo appt this

> morn actually , where his carnitine issue came up - they

> basically went thru all his abnormal bloods, and carnitine is his

> most 'out there' result, (last level was done in July) so he

> discussed it a fair bit. I can't recall his exact levels, will have a

> dig later and post them to compare.

> >   He examined v thoroughly, and agreed with me, no pressing

> need in his opinion to supplement him, he is non-symptomatic except

> for the slow growth issue - which he believes with is more a

> combination of things, ie - poss carn def, poss zinc def, topomax,

> mild chronic acidosis, prolonged state of ketosis, and the list goes

> on....

> >   He said yes, supplementing with carnitine, zinc, and adding some

> bicarb to combat the acidity may all help his growth rate improve,

> but except for the zinc (which he thinks isn't really that big a deal

> growth wise anyway), these measures have previously resulted in

> seizures break through or increase with , and basically

> priority wise - continued seizure freedom was at the top of the list.

> Maybe if we reach the 12 mth seizure free mark we will start playing

> around a bit in late Dec. Gulp.

> >   Soooo, on we plod knowing that overall has some deficiency

> issues, but no one is keen on upsetting the seizure freedom status

> quo. He may be fine right now even if we made those changes, who

> knows, but.....

> >

> >   Anyways....It does sound to me from 's symptoms though,

> like it would be maybe worth trying him on some carnitine - Dr

> Freeman recommends supplementing for a month to see if there is any

> clinical improvement, and yes, did react badly to it, but - he

> reacts excessively to most things (!!) so don't let that put you off

> toooo much

> >   If you see any signs at all of an adverse reaction, well, pull

> the plug sooner rather than later, at least you will then know that

> it has to be crossed off the list for the future. And yes - on the

> other hand, it may well be his answer, the last piece of the puzzle

> so to speak. If not, well then, onwards to other measures...

> >   Starting slowly and incrementing up every 2-3 days to reach

> between 50 and 100 mgs per kg per day is the usual recommendation, it

> took us 2 weeks to get to a 'theraputic' level of 50 mgs per kg with

> , but when his follow up levels came back after we pulled the

> plug on it, he had overshot the mark, hugely over the top in all

> areas on the profile. This is not supposed to do any harm, just gets

> termed 'expensive urine', in other words what the body doesn't need,

> it just gets peed out, but it was still a shock to see how high he

> had actually got.

> >   Re the cal/ratio issue, if you are going to try the carnitne, I

> really would not alter anything else till after it is in the

> theraputic range. If does have an issue with efficent fat

> metabolism due to a carnitine deficiency, and the

> supplementing 'fixes' that, then you might see a marked difference in

> quite a few areas. 's cal intake for example, I believe was far

> too low for when everything started 'speeding up', and carn is known

> as a 'fat busting' supplement, allowing easier burning of body fat

> etc - meaning that you may have to reverse back any changes you were

> about to make now.

> >   Depends though on which way you want to go first - see if you can

> fix things with carnitine, or see if by altering his diet you can get

> away with not supplementing...

> >   It can take a fair while for carnitine issues to show on the diet

> from what I can gather - I know that was fine for his first yr

> or so, but after time it seemed to start having an effect, a bit

> different with us though because of the depakote being included in

> the equation.

> >   If it were me, I think I would keep things as is and see if

> adding carn makes a positive difference, in weight, height, energy

> and seizure control. Any seizure increase, ditch immediately, any

> improvement, keep on incrementing up till you feel he is in the right

> place clinically, and get follow up bloods to compare to his last

> levels. Any huge increase in ketones has to be watched for - like

> either from increased body fat buring or from burning thru caloric

> fat more efficiently, so keep a v close eye on his weight too.

> >   I'll send you thru a paper on carnitine and the diet that I have

> here that sets out how that ratio is determined when a carn profile

> is done, at least you'll have it for the next time he is tested.

> >

> >  

> >

> >     ----- Original Message -----

> >     From: michelle paulson

> >

> >

> >     Hi -

> >     Boy, you qualify as an " expert " to me - Thank you for

> >     all that info!  Wish I would have consulted w/you

> >     instead of my neuro b/c my neuro only requested a

> >     " carnitine level " instead of " profile " which means I

> >     only got one number.  What a waste of time.  Pisses me

> >     off, actually, and will ask her why she didn't order a

> >     profile when she finally decides to call about the low

> >     number in the first place.

> >

> >     Two things - one - was reading that if it is a true

> >     primary deficiency, red flags would have been raised

> >     at his biochemical screening test when initiating the

> >     diet one year ago.  Apparently highly elevated

> >     dicarboxylic acids in the urine signal a problem w/the

> >     normal pathway of metabolism. All tests came back

> >     perfect at that time.   Plus, looking back - had a

> >     " profile " done in March of this past year and they

> >     were OK.  So... something has happened since then.

> >     Probably has something to do w/me taking away animal

> >     fat/protein the past 3 months.  He hasn't ingested any

> >     food to produce it though, I guess his body could have

> >     endogenously been producing.  If anything - a

> >     secondary deficiency due to the diet but still

> >     interfering w/his body being able to burn fat.

> >     Troubling. 

> >

> >     He certainly has the symptoms - mainly hypotonia and

> >     uncoordination but it's definitely gotten worst.

> >     Defintely has slowed down ht. wise and has gained

> >     weight.  Nothing else " stands out " . 

> >

> >     He has gained over a lb. in the past month with no

> >     recent growth in height.  My soon-to-be new

> >     nutritionist has not met him yet but got his paperwork

> >     and called to tell me she figured him to be in the

> >     980-1030 cal. range (he's at 1080 now) w/16.8g protein

> >     (he's currently getting 19g/day).  So, we are in the

> >     ball park but I may need to do some adjusting there to

> >     compensate for this recent weight gain.  We meet w/her

> >     Sept. 30 so I don't know if I should sit tight until

> >     then or reduce one or both (cals/protein) before we

> >     meet.  Any suggestions?

> >

> >     So, had problems on carnitine, huh?  I've

> >     certainly read that it is common so that's why I'm

> >     scared although it would certainly be nice to be on

> >     the opposite end and see those last seizures disappear

> >     w/regained strength.  He used to be my strongest kid.

> >

> >     MANY thanks, , our resident expert on nearly all

> >     aspects of this diet - sure is a bummer that you don't

> >     get paid the bookoo bucks that some of our incompetent

> >     Dr.s do to figure things out.

> >

> >     (mom to )

> >

> >

> >

> >

> >

[Guest guest]

I will try Emma, but when I attempted to send it to last night, it

wouldn't send

I'll give it another go today.

So, the seizures eased off after you stopped the carnitine? Poss in 's

case he did have an adverse reaction then? Because they did escalate after you

had started it, didn't they? Probably impossible to know though, cos you had the

cal issue going on too, so I guess reintroducing it when he has been stable for

a long time is gonna be the only way to tell.

The paper I have on the carnitine is really really favouring it's use with

keto, with no mention at all really of any adverse reactions - but the link to

Sigma Tau (the actual website is not by them though) describing the Carnitor

brand and dosage does at least have the warning in there about the potential to

aggravate some seizure syndromes.

But on the flip side - carnitine is one that is recomemended following a

period of catabolism, I was always aware of that with , but scared witless

to use it to speed his recovery

The sweating as a stress response (so in our kiddies case poss as a reaction

the the seizure itself) is the only bit I dug up in my travels relating to that,

but like everything to do with all this, I guess there are quite a few

possibilities to pick from.

I still say these ones is having in sleep may be the last to peeter

out after the period of instability he had, but I s'pose there has to be some

sort of time limit put on how long it actually takes for them to disappear. Like

if they drag on tooooo much longer then maybe something else needs changing.

Million dollar question though as to when, and what in particular to target.....

I hope he had a lovely day yesterday, and that you are finally getting some

decent sleep

----- Original Message -----

From: ketomum68

and All,

Could you send the carnitine paper through to me as well please!

Thanks . I stopped giving carnitine a couple of weeks

ago when I was going through that second YUK patch with him. Have

not introduced it back yet but he is not showing any signs of being

deficient at the moment - will wait until he gets tested again.

Matt now 10 years old (birthday yesterday!!!) and so far (tempting

fate AGAIN!) he has had a brilliant week - the best in along time.

However, I still can't get rid of that 10pm seizure - albeit for one

night when he decided to have a seizure at 6am instead! It seems to

be one or the other with him at the moment - can't lock down the

reason why though - so at the moment it is 1 per night - they have

got less intense but I am still working on getting rid of the damned

thing!

The sweating and clammy issue - still trying to look into this one as

well and find out why! Apparently you get sweaty and clammy when the

metabolisim has speeded up - maybe when some of our kids are getting

sweaty and clammy it is related to their metabolism running at a fast

rate - I don't know but this is the latest bit I am researching into

at the moment - just thought I would share!

Love to everyone.

[Guest guest]

I will try Emma, but when I attempted to send it to last night, it

wouldn't send

I'll give it another go today.

So, the seizures eased off after you stopped the carnitine? Poss in 's

case he did have an adverse reaction then? Because they did escalate after you

had started it, didn't they? Probably impossible to know though, cos you had the

cal issue going on too, so I guess reintroducing it when he has been stable for

a long time is gonna be the only way to tell.

The paper I have on the carnitine is really really favouring it's use with

keto, with no mention at all really of any adverse reactions - but the link to

Sigma Tau (the actual website is not by them though) describing the Carnitor

brand and dosage does at least have the warning in there about the potential to

aggravate some seizure syndromes.

But on the flip side - carnitine is one that is recomemended following a

period of catabolism, I was always aware of that with , but scared witless

to use it to speed his recovery

The sweating as a stress response (so in our kiddies case poss as a reaction

the the seizure itself) is the only bit I dug up in my travels relating to that,

but like everything to do with all this, I guess there are quite a few

possibilities to pick from.

I still say these ones is having in sleep may be the last to peeter

out after the period of instability he had, but I s'pose there has to be some

sort of time limit put on how long it actually takes for them to disappear. Like

if they drag on tooooo much longer then maybe something else needs changing.

Million dollar question though as to when, and what in particular to target.....

I hope he had a lovely day yesterday, and that you are finally getting some

decent sleep

----- Original Message -----

From: ketomum68

and All,

Could you send the carnitine paper through to me as well please!

Thanks . I stopped giving carnitine a couple of weeks

ago when I was going through that second YUK patch with him. Have

not introduced it back yet but he is not showing any signs of being

deficient at the moment - will wait until he gets tested again.

Matt now 10 years old (birthday yesterday!!!) and so far (tempting

fate AGAIN!) he has had a brilliant week - the best in along time.

However, I still can't get rid of that 10pm seizure - albeit for one

night when he decided to have a seizure at 6am instead! It seems to

be one or the other with him at the moment - can't lock down the

reason why though - so at the moment it is 1 per night - they have

got less intense but I am still working on getting rid of the damned

thing!

The sweating and clammy issue - still trying to look into this one as

well and find out why! Apparently you get sweaty and clammy when the

metabolisim has speeded up - maybe when some of our kids are getting

sweaty and clammy it is related to their metabolism running at a fast

rate - I don't know but this is the latest bit I am researching into

at the moment - just thought I would share!

Love to everyone.

[Guest guest]

I will try Emma, but when I attempted to send it to last night, it

wouldn't send

I'll give it another go today.

So, the seizures eased off after you stopped the carnitine? Poss in 's

case he did have an adverse reaction then? Because they did escalate after you

had started it, didn't they? Probably impossible to know though, cos you had the

cal issue going on too, so I guess reintroducing it when he has been stable for

a long time is gonna be the only way to tell.

The paper I have on the carnitine is really really favouring it's use with

keto, with no mention at all really of any adverse reactions - but the link to

Sigma Tau (the actual website is not by them though) describing the Carnitor

brand and dosage does at least have the warning in there about the potential to

aggravate some seizure syndromes.

But on the flip side - carnitine is one that is recomemended following a

period of catabolism, I was always aware of that with , but scared witless

to use it to speed his recovery

The sweating as a stress response (so in our kiddies case poss as a reaction

the the seizure itself) is the only bit I dug up in my travels relating to that,

but like everything to do with all this, I guess there are quite a few

possibilities to pick from.

I still say these ones is having in sleep may be the last to peeter

out after the period of instability he had, but I s'pose there has to be some

sort of time limit put on how long it actually takes for them to disappear. Like

if they drag on tooooo much longer then maybe something else needs changing.

Million dollar question though as to when, and what in particular to target.....

I hope he had a lovely day yesterday, and that you are finally getting some

decent sleep

----- Original Message -----

From: ketomum68

and All,

Could you send the carnitine paper through to me as well please!

Thanks . I stopped giving carnitine a couple of weeks

ago when I was going through that second YUK patch with him. Have

not introduced it back yet but he is not showing any signs of being

deficient at the moment - will wait until he gets tested again.

Matt now 10 years old (birthday yesterday!!!) and so far (tempting

fate AGAIN!) he has had a brilliant week - the best in along time.

However, I still can't get rid of that 10pm seizure - albeit for one

night when he decided to have a seizure at 6am instead! It seems to

be one or the other with him at the moment - can't lock down the

reason why though - so at the moment it is 1 per night - they have

got less intense but I am still working on getting rid of the damned

thing!

The sweating and clammy issue - still trying to look into this one as

well and find out why! Apparently you get sweaty and clammy when the

metabolisim has speeded up - maybe when some of our kids are getting

sweaty and clammy it is related to their metabolism running at a fast

rate - I don't know but this is the latest bit I am researching into

at the moment - just thought I would share!

Love to everyone.

[Guest guest]

,

If carnitine improves the digestion of fat, it would seem that calories

might have to be adjusted downward significantly to get to the right

level? It's a long process of trial and error, right?

It might not be seizures occurring because of the use of carnitine, but

rather the effect of the increased calories from the improved digestion

of the fat in the diet.

Bill

& Hill wrote:

> I will try Emma, but when I attempted to send it to last night, it

wouldn't send

> I'll give it another go today.

> So, the seizures eased off after you stopped the carnitine? Poss in

's case he did have an adverse reaction then? Because they did escalate

after you had started it, didn't they? Probably impossible to know though, cos

you had the cal issue going on too, so I guess reintroducing it when he has been

stable for a long time is gonna be the only way to tell.

> The paper I have on the carnitine is really really favouring it's use with

keto, with no mention at all really of any adverse reactions - but the link to

Sigma Tau (the actual website is not by them though) describing the Carnitor

brand and dosage does at least have the warning in there about the potential to

aggravate some seizure syndromes.

> But on the flip side - carnitine is one that is recomemended following a

period of catabolism, I was always aware of that with , but scared witless

to use it to speed his recovery

> The sweating as a stress response (so in our kiddies case poss as a reaction

the the seizure itself) is the only bit I dug up in my travels relating to that,

but like everything to do with all this, I guess there are quite a few

possibilities to pick from.

> I still say these ones is having in sleep may be the last to peeter

out after the period of instability he had, but I s'pose there has to be some

sort of time limit put on how long it actually takes for them to disappear. Like

if they drag on tooooo much longer then maybe something else needs changing.

Million dollar question though as to when, and what in particular to target.....

> I hope he had a lovely day yesterday, and that you are finally getting some

decent sleep

>

>

>

>

> ----- Original Message -----

> From: ketomum68

>

> and All,

>

> Could you send the carnitine paper through to me as well please!

> Thanks . I stopped giving carnitine a couple of weeks

> ago when I was going through that second YUK patch with him. Have

> not introduced it back yet but he is not showing any signs of being

> deficient at the moment - will wait until he gets tested again.

>

> Matt now 10 years old (birthday yesterday!!!) and so far (tempting

> fate AGAIN!) he has had a brilliant week - the best in along time.

> However, I still can't get rid of that 10pm seizure - albeit for one

> night when he decided to have a seizure at 6am instead! It seems to

> be one or the other with him at the moment - can't lock down the

> reason why though - so at the moment it is 1 per night - they have

> got less intense but I am still working on getting rid of the damned

> thing!

>

> The sweating and clammy issue - still trying to look into this one as

> well and find out why! Apparently you get sweaty and clammy when the

> metabolisim has speeded up - maybe when some of our kids are getting

> sweaty and clammy it is related to their metabolism running at a fast

> rate - I don't know but this is the latest bit I am researching into

> at the moment - just thought I would share!

>

> Love to everyone.

>

>

>

>

>

>

>