Re: - weight gain/catabolism

August 26, 2004

How is he doing now Emma? Careful how quickly you drop those cals, you don't

want to tip him back the other way, this is where the dieticians are the best to

advise - but I know the feeling - mine is away right now too

Pg 93 of Freeman's book is probably the best info he offers on this one - 'as

few as 100 cals too many per day can upset ketosis, in smaller infants even 25

cals per day may be critical'.......'we will at times test the system in the

child with low ketones by fasting the child for 24 hrs. If the ketones rise

after this fast then we will decrease cals.....'at an excess of 100 cals per day

it takes an entire month before any weight gain is seen'

Pg 123....'children should be weighed every week...over the longer term

children should gain weight in proportion to their growth in height. Children

should be measured every 3 mths in their physician's office, their height and

weight plotted on a growth chart, and calories should be adjusted to keep weight

proportional to growth'

However....all this is well and good (the latter part more as a preventative

measure) if there hasn't been a state of catabolism previously, and nowhere is

this touched upon in the book. Perhaps it was high time it WAS included, cos it

is very complicated as to what happens' next' after a period of malnourishment.

Weight wise, growth wise, and metabolism wise.

The 90 min clockwork thing you are seeing is probably as he changes with

seizure susceptibilty to sleep patterns - not that it is much help knowing why,

I know you just want the damn things gone fullstop...

How long does this crap last you ask? Well, how long's that damn piece of

string basically

As you know had a second period of being catabolic 6 mths after his

first introduction to that particular nasty...but the initial cal increase

seemed to settle him for a lot longer than you have seen with , so I am

guessing that 's calorie increase at the time was a lot more in line with

what his body needed than 's recent cal hike was. BUT - that was probably

due to the fact we weren't guessing like you have had to - we had the benefit of

the ree dx test to work with. See how important I think it is as a finetuning

tool, especially when the situation has gone to an extreme such as catabolism?

If what you have tried this time doesn't work Emma, I think you may have to

get your demanding hat on - I know you already have it and use it a lot - but

this to me seems critical - there is a machine available, you have to shout and

scream and stress the importance of it being used here and now to get

back on track I think?

Our dietician somehow approved 's, I don't even think our neuro team

knew what the machine was for.....can you go up another hospital funding path to

get one done? If no joy, straight to the top - ie - management where the budget

strings are pulled?

You have the paper from Hopkins on the use of calometry (sp?), ie - ree dx to

set calories as being a step in the right direction accuracy wise to arm

yourself with?

Back it up by using the argument that if you dont get this cal issue sorted

out, the cost to the health system overall will be a helluva lot higher if you

have to start back down the road of using hospital admissions/resources and

drugs on a regular basis - they are costly, very costly - whereas preventative

measures here and now (to stop this cycle escalating too much further) could

save them a ****load of money if they think about it logically and using their

business/financial heads. Yes?

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

From: ketomum68

His dietician is away at the moment and I was going to 'play it safe'

and reduce by 50 but I have reduced by 100 today as he was so groggy.

I have given him meds this evening (10mg clobazam) but he has already

had 1 t/c so far. I am going to wait until about 2am to do

bloods/ketones etc because he has either just eaten or just had a fit

and it will mess up the readings! His urine ketones were 8 tonight

which is usually good for . I just hope he has a better night

tonight than he has had.

If he is still going for it tonight and not good tomorrow then I am

going to reduce again - let's face it - he is fitting at the moment

anyway and I am really concerned that he has put on nearly 2kgs in

about 3 weeks - not good.

How long does this crap last - it's doing my head in and I HATE the

fact that I have had to give him clobazam tonight but he is back in

the pattern of everytime he goes to sleep he starts to fit and it is

nearly ALWAYS about 90 minutes - 2 hours after he goes to sleep, I

can practically set my watch by him.

Anyway, enough of my moaning. Let me know how things are with you

and you take care.

Much love,

Emma. x Mum to .

August 26, 2004

It is 4.20am in the UK at the moment and I have had to watch my boy

fit every half hour from about 10.30pm last night and right now I am

gripped with this panic that for some reason this diet may have

stopped working for him and there is nothing left for us to try. I

know I am probably being totally irrational and over the top at the

moment (tiredness not helping here folks) but I don't know what else

to do right now and I'm afraid that I am having to 'unload' to you

guys.

I read the Freeman section on the calories and I thought about

fasting him for 24 hours. To be quite honest, I don't know what to do

for the best right now. Options I am thinking through at the moment

are:

1. Put him back to the calories he was on before this kicked off

i.e. 1860 with a 100 cal increase and using LCT oils instead of MCT

oils (which have fewer calories in them). This hopefully slowing any

weight gain down and maybe him losing some of the rapid weight he has

put on over the past 2 weeks.

2. Fast him for 24 hours and see how his ketones are doing etc re:

Freeman book.

3. Possibly look at reducing his ratio - he was doing well on a

lower ratio before this lot kicked off (with increased MCT oil).

Every time goes to sleep he is fitting - he is not fitting

when he is awake though - the panic that is gripping me is that if he

is catabolic and we are having all these problems with calories etc,

etc - then why isn't he fitting all the time (desperately NOT trying

to tempt fate here). I know normally only has nocturnal

seizures anyway, but when he is sickening for something then he will

have seizures at any time not just when asleep.

I have been riding the storm tonight and have NOT given him any

valium. I don't know whether this is the right thing or not - last

night I gave him 10mg Clobazam and he still had 7 seizures and

couldn't walk this morning. Maybe I should give him the valium, but

I keep hoping that he will make that 'cross-over' in his sleep and

finally get some good quality rest, but if I give him the valium then

I am keeping him in a more vulnerable state for seizures. I am

sleeping downstairs with him at the moment because that way I don't

break my back trying to carry him downstairs in the morning.

This was the weekend that Matt was supposed to go to respite as well

(this will be the second one I am cancelling) as I was going to have

some time with Alice (my 8 year old) - she is great by saying she

doesn't mind - she is a special kid in her own right - but doesn't

stop me feeling like the worst mummy in the world!! To cap it all

this week his father (spineless a***hole) is not going to see

anymore because he is 'too big and I can't cope with him anymore' he

says, obviously has nothing to do with the fact that he now has a new

son whom is just about 3 months old!!! Is it me or is this a bit of a

coincidence!!!! Sorry people, you don't need to hear all this but I

am just in dire need of a sound off because the world is feeling like

a pretty lonely place right now (wallowing in self pity at the

moment - will snap out of it very soon I promise!)

Immediate plans for 8.30am this morning is to phone his local

consultant, track the bas***d down, dump in his lap and

demand a ree dx scan (I think tired, panic stricken, over protective

mummy that is 6ft tall and pi***d off should put the wind up him

enough). I am also going to phone is Consultant at GOSH too and see

what she has to say.

Will keep you all posted and any suggestions you guys have will be

most welcome - right now I am tired, emotional and you lot will have

to be my sensible head. All I hope is that when I visit our local

hospital I will bump into the consultant that first treated

(he is now at our local hospital here - he's following us!) so that I

can get some pent up aggression and frustration out on battering the

living daylights out of him!! He was the one that told me that the

diet was crap etc, didn't work, difficult to manage etc, etc. He was

also the one that put on all the different drugs which caused more

seizures and status episodes and nights in intensive care etc, etc.

as 2 when I first asked for the diet - took me 6 years to get

him on it.

Sorry for the whinge guys, but I don't know what to do for the best

right now.

Take Care and thanks.

Emma - Mum to who is really have a bad time.

> How is he doing now Emma? Careful how quickly you drop those

cals, you don't want to tip him back the other way, this is where the

dieticians are the best to advise - but I know the feeling - mine is

away right now too

> Pg 93 of Freeman's book is probably the best info he offers on

this one - 'as few as 100 cals too many per day can upset ketosis, in

smaller infants even 25 cals per day may be critical'.......'we will

at times test the system in the child with low ketones by fasting the

child for 24 hrs. If the ketones rise after this fast then we will

decrease cals.....'at an excess of 100 cals per day it takes an

entire month before any weight gain is seen'

> Pg 123....'children should be weighed every week...over the

longer term children should gain weight in proportion to their growth

in height. Children should be measured every 3 mths in their

physician's office, their height and weight plotted on a growth

chart, and calories should be adjusted to keep weight proportional to

growth'

>

> However....all this is well and good (the latter part more as a

preventative measure) if there hasn't been a state of catabolism

previously, and nowhere is this touched upon in the book. Perhaps it

was high time it WAS included, cos it is very complicated as to what

happens' next' after a period of malnourishment. Weight wise, growth

wise, and metabolism wise.

> The 90 min clockwork thing you are seeing is probably as he

changes with seizure susceptibilty to sleep patterns - not that it is

much help knowing why, I know you just want the damn things gone

fullstop...

> How long does this crap last you ask? Well, how long's that damn

piece of string basically

> As you know had a second period of being catabolic 6 mths

after his first introduction to that particular nasty...but the

initial cal increase seemed to settle him for a lot longer than you

have seen with , so I am guessing that 's calorie

increase at the time was a lot more in line with what his body needed

than 's recent cal hike was. BUT - that was probably due to

the fact we weren't guessing like you have had to - we had the

benefit of the ree dx test to work with. See how important I think it

is as a finetuning tool, especially when the situation has gone to an

extreme such as catabolism?

> If what you have tried this time doesn't work Emma, I think you

may have to get your demanding hat on - I know you already have it

and use it a lot - but this to me seems critical - there is a machine

available, you have to shout and scream and stress the importance of

it being used here and now to get back on track I think?

> Our dietician somehow approved 's, I don't even think our

neuro team knew what the machine was for.....can you go up another

hospital funding path to get one done? If no joy, straight to the

top - ie - management where the budget strings are pulled?

> You have the paper from Hopkins on the use of calometry (sp?),

ie - ree dx to set calories as being a step in the right direction

accuracy wise to arm yourself with?

> Back it up by using the argument that if you dont get this cal

issue sorted out, the cost to the health system overall will be a

helluva lot higher if you have to start back down the road of using

hospital admissions/resources and drugs on a regular basis - they are

costly, very costly - whereas preventative measures here and now (to

stop this cycle escalating too much further) could save them a

****load of money if they think about it logically and using their

business/financial heads. Yes?

>

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

> From: ketomum68

>

> His dietician is away at the moment and I was going to 'play it

safe'

> and reduce by 50 but I have reduced by 100 today as he was so

groggy.

>

> I have given him meds this evening (10mg clobazam) but he has

already

> had 1 t/c so far. I am going to wait until about 2am to do

> bloods/ketones etc because he has either just eaten or just had

a fit

> and it will mess up the readings! His urine ketones were 8

tonight

> which is usually good for . I just hope he has a better

night

> tonight than he has had.

>

> If he is still going for it tonight and not good tomorrow then

I am

> going to reduce again - let's face it - he is fitting at the

moment

> anyway and I am really concerned that he has put on nearly 2kgs

in

> about 3 weeks - not good.

>

> How long does this crap last - it's doing my head in and I HATE

the

> fact that I have had to give him clobazam tonight but he is

back in

> the pattern of everytime he goes to sleep he starts to fit and

it is

> nearly ALWAYS about 90 minutes - 2 hours after he goes to

sleep, I

> can practically set my watch by him.

>

> Anyway, enough of my moaning. Let me know how things are with

you

> and you take care.

>

> Much love,

> Emma. x Mum to .

>

August 26, 2004

--

Hi Emma,

I am also in UK, also early morning- My heart is with you, it would be

nearly impossible to make the right suggestions not knowing your

child, but this is how I would tackle this issue.

When my son has many little fits one after another, I give him a

rectal diazepam and it stops them all completely at least for 1 week

or more. Given that diazepam has a half life of 2hr 1/2, and it

effects should wear off quickly, that means that in my son's case,

some of his fits are triggered by the fits, something called kindling.

Repeated sub-clinical (or small fits) can lead to a more serious

seizure. Repeated seizure are damaging for brain function.

Has this situation just happened (sorry I am new on the list) or have

you had this sort of activity on and off and if so since how long?

You could try to track down abnormalities by doing extensive lab work

on all physiological parameters that might affects your son; viral

infection (herpes, for e.g. even with no skin lesions, can cause

seizure), immune dysfunction, basic metabolism, heavy metals toxicity.

All of this is private and you would have to pay for it, but without

more data, it will be hard to tackle the seizure you have. I would for

now at your place, limit the fits at all cost (that could include

temporally on an anti-convulsant, until you recover from the stress,

get more lab work done, and start again new with the diet and more

therapies in place). I would also ask for a high-resolution scan to be

done.

Have you approach also a cranial sacral therapist?

Yo need to know what is happenng and for this you need some lab work.

Unfortunately that often means (specially in UK) to take the

responsability to set that up yourself, the NHS does not have the

resources or the knowledge for that matter. No need to be angry with

your son's doctors, you should instead use all this energy to find the

right people, the right lab work, and inform yourself as much as

possible. That is once you have had a good rest.

All my support to you.

Lorene/Edinburgh

- In ketogenic , " ketomum68 " wrote:

> It is 4.20am in the UK at the moment and I have had to watch my boy

> fit every half hour from about 10.30pm last night and right now I am

> gripped with this panic that for some reason this diet may have

> stopped working for him and there is nothing left for us to try. I

> know I am probably being totally irrational and over the top at the

> moment (tiredness not helping here folks) but I don't know what else

> to do right now and I'm afraid that I am having to 'unload' to you

> guys.

>

> I read the Freeman section on the calories and I thought about

> fasting him for 24 hours. To be quite honest, I don't know what to do

> for the best right now. Options I am thinking through at the moment

> are:

>

> 1. Put him back to the calories he was on before this kicked off

> i.e. 1860 with a 100 cal increase and using LCT oils instead of MCT

> oils (which have fewer calories in them). This hopefully slowing any

> weight gain down and maybe him losing some of the rapid weight he has

> put on over the past 2 weeks.

>

> 2. Fast him for 24 hours and see how his ketones are doing etc re:

> Freeman book.

>

> 3. Possibly look at reducing his ratio - he was doing well on a

> lower ratio before this lot kicked off (with increased MCT oil).

>

> Every time goes to sleep he is fitting - he is not fitting

> when he is awake though - the panic that is gripping me is that if he

> is catabolic and we are having all these problems with calories etc,

> etc - then why isn't he fitting all the time (desperately NOT trying

> to tempt fate here). I know normally only has nocturnal

> seizures anyway, but when he is sickening for something then he will

> have seizures at any time not just when asleep.

>

> I have been riding the storm tonight and have NOT given him any

> valium. I don't know whether this is the right thing or not - last

> night I gave him 10mg Clobazam and he still had 7 seizures and

> couldn't walk this morning. Maybe I should give him the valium, but

> I keep hoping that he will make that 'cross-over' in his sleep and

> finally get some good quality rest, but if I give him the valium then

> I am keeping him in a more vulnerable state for seizures. I am

> sleeping downstairs with him at the moment because that way I don't

> break my back trying to carry him downstairs in the morning.

>

> This was the weekend that Matt was supposed to go to respite as well

> (this will be the second one I am cancelling) as I was going to have

> some time with Alice (my 8 year old) - she is great by saying she

> doesn't mind - she is a special kid in her own right - but doesn't

> stop me feeling like the worst mummy in the world!! To cap it all

> this week his father (spineless a***hole) is not going to see

> anymore because he is 'too big and I can't cope with him anymore' he

> says, obviously has nothing to do with the fact that he now has a new

> son whom is just about 3 months old!!! Is it me or is this a bit of a

> coincidence!!!! Sorry people, you don't need to hear all this but I

> am just in dire need of a sound off because the world is feeling like

> a pretty lonely place right now (wallowing in self pity at the

> moment - will snap out of it very soon I promise!)

>

> Immediate plans for 8.30am this morning is to phone his local

> consultant, track the bas***d down, dump in his lap and

> demand a ree dx scan (I think tired, panic stricken, over protective

> mummy that is 6ft tall and pi***d off should put the wind up him

> enough). I am also going to phone is Consultant at GOSH too and see

> what she has to say.

>

> Will keep you all posted and any suggestions you guys have will be

> most welcome - right now I am tired, emotional and you lot will have

> to be my sensible head. All I hope is that when I visit our local

> hospital I will bump into the consultant that first treated

> (he is now at our local hospital here - he's following us!) so that I

> can get some pent up aggression and frustration out on battering the

> living daylights out of him!! He was the one that told me that the

> diet was crap etc, didn't work, difficult to manage etc, etc. He was

> also the one that put on all the different drugs which caused more

> seizures and status episodes and nights in intensive care etc, etc.

> as 2 when I first asked for the diet - took me 6 years to get

> him on it.

>

> Sorry for the whinge guys, but I don't know what to do for the best

> right now.

>

> Take Care and thanks.

>

> Emma - Mum to who is really have a bad time.

>

> > How is he doing now Emma? Careful how quickly you drop those

> cals, you don't want to tip him back the other way, this is where the

> dieticians are the best to advise - but I know the feeling - mine is

> away right now too

> > Pg 93 of Freeman's book is probably the best info he offers on

> this one - 'as few as 100 cals too many per day can upset ketosis, in

> smaller infants even 25 cals per day may be critical'.......'we will

> at times test the system in the child with low ketones by fasting the

> child for 24 hrs. If the ketones rise after this fast then we will

> decrease cals.....'at an excess of 100 cals per day it takes an

> entire month before any weight gain is seen'

> > Pg 123....'children should be weighed every week...over the

> longer term children should gain weight in proportion to their growth

> in height. Children should be measured every 3 mths in their

> physician's office, their height and weight plotted on a growth

> chart, and calories should be adjusted to keep weight proportional to

> growth'

> >

> > However....all this is well and good (the latter part more as a

> preventative measure) if there hasn't been a state of catabolism

> previously, and nowhere is this touched upon in the book. Perhaps it

> was high time it WAS included, cos it is very complicated as to what

> happens' next' after a period of malnourishment. Weight wise, growth

> wise, and metabolism wise.

> > The 90 min clockwork thing you are seeing is probably as he

> changes with seizure susceptibilty to sleep patterns - not that it is

> much help knowing why, I know you just want the damn things gone

> fullstop...

> > How long does this crap last you ask? Well, how long's that damn

> piece of string basically

> > As you know had a second period of being catabolic 6 mths

> after his first introduction to that particular nasty...but the

> initial cal increase seemed to settle him for a lot longer than you

> have seen with , so I am guessing that 's calorie

> increase at the time was a lot more in line with what his body needed

> than 's recent cal hike was. BUT - that was probably due to

> the fact we weren't guessing like you have had to - we had the

> benefit of the ree dx test to work with. See how important I think it

> is as a finetuning tool, especially when the situation has gone to an

> extreme such as catabolism?

> > If what you have tried this time doesn't work Emma, I think you

> may have to get your demanding hat on - I know you already have it

> and use it a lot - but this to me seems critical - there is a machine

> available, you have to shout and scream and stress the importance of

> it being used here and now to get back on track I think?

> > Our dietician somehow approved 's, I don't even think our

> neuro team knew what the machine was for.....can you go up another

> hospital funding path to get one done? If no joy, straight to the

> top - ie - management where the budget strings are pulled?

> > You have the paper from Hopkins on the use of calometry (sp?),

> ie - ree dx to set calories as being a step in the right direction

> accuracy wise to arm yourself with?

> > Back it up by using the argument that if you dont get this cal

> issue sorted out, the cost to the health system overall will be a

> helluva lot higher if you have to start back down the road of using

> hospital admissions/resources and drugs on a regular basis - they are

> costly, very costly - whereas preventative measures here and now (to

> stop this cycle escalating too much further) could save them a

> ****load of money if they think about it logically and using their

> business/financial heads. Yes?

> >

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

> > From: ketomum68

> >

> > His dietician is away at the moment and I was going to 'play it

> safe'

> > and reduce by 50 but I have reduced by 100 today as he was so

> groggy.

> >

> > I have given him meds this evening (10mg clobazam) but he has

> already

> > had 1 t/c so far. I am going to wait until about 2am to do

> > bloods/ketones etc because he has either just eaten or just had

> a fit

> > and it will mess up the readings! His urine ketones were 8

> tonight

> > which is usually good for . I just hope he has a better

> night

> > tonight than he has had.

> >

> > If he is still going for it tonight and not good tomorrow then

> I am

> > going to reduce again - let's face it - he is fitting at the

> moment

> > anyway and I am really concerned that he has put on nearly 2kgs

> in

> > about 3 weeks - not good.

> >

> > How long does this crap last - it's doing my head in and I HATE

> the

> > fact that I have had to give him clobazam tonight but he is

> back in

> > the pattern of everytime he goes to sleep he starts to fit and

> it is

> > nearly ALWAYS about 90 minutes - 2 hours after he goes to

> sleep, I

> > can practically set my watch by him.

> >

> > Anyway, enough of my moaning. Let me know how things are with

> you

> > and you take care.

> >

> > Much love,

> > Emma. x Mum to .

> >

August 27, 2004

It really is all happening at once there isn't it

Deep breath - save most of the nasty ex hubby thoughts later on (sounds like

he deserves a fair few of 'em..ugh) and muster the aggro instead towards his

pathetic attitude for your 8.30 am phone call for the ree dx request/demand. It

is not a scan btw for when you ask for it...it is just called a ree dx 'test'

(resting energy expediture). The scan wording comes in for the dexa scan, the

other one used after being catabolic, which is like an xray that will tell you

what state his fat/muscle (body composition) is in. That one will not help cal

wise at this point now though, so is not as urgent, it will be needed more once

this storm settles.

I would save any decision making diet wise till you know if the ree dx is

gonna happen - otherwise any changes you are considering may have to be undone

depending on what shows.

's bad seizures came only in sleep too during all this, basically

because his control was so tenuous that they raised their ugly heads when he was

more susceptible - ie - asleep. Nightmarish though those nights were - (it is a

pretty lonely place at night during this crap, I know, and that was even with a

hubby there to share the load....don't honestly know how the hell you are even

doing this!!!) at least it IS contained to night only, which is something to be

thankful for - probably doesn't feel like it right now after the kind of night

you have just spent, but it is....

Which yes - brings you to your next dilemma of whether to try stamping on it

with the benzos that can do more harm than good because of the sleep cycle

disruptions they can cause. However - this risk has to be weighed against the

risk of NOT intervening and allowing the cycle to get more and more out of hand,

potentially culminating in daytime seizure activity too - clearly what you don't

want or need right now.

How long are the ones that came every hour last night lasting? If prolonged,

like cluster types rather than 'one off's', I think I personally would probably

intervene if tonight repeats with that pattern. One an hr would not officially

be termed convulsive status if he is recovering in between, but it is getting a

bit close for comfort

probably more so than clobazam in my opinion, quicker acting with a

longer half life, so less risk of rebound seizures as the dose wears off. But

you know Matthw better than anyone of course, so you know which med if any it is

likely he would respond better to. If you are now on the right track cal/diet

wise, (and I know it is a big if till you can hopefully get it confirmed thru

testing...) then he may be at the point where he does indeed need a med

intervention to hopefully calm things down, break the cycle, and allow him to

start over.

If you do go down this road, he may need consecutive doses to keep on top of

it, perhaps even 4 hrly, whether or not it works initally. Stops the Beast

having the chance to rise back up again...If you see any adverse reaction from

using it, like even more seizures in sleep, or so much sedation hangover the

next day that he seizes when awake as well, you will know not to try it again.

I am up and about for the next few hrs, will keep an eye out for any updates

or questions, or just for an 'ear'

Won't be on this pute though, so may miss any direct emails, so I'll check

either here on keto, or on suric-pacific@... ('s laptop I will

have upstairs with me).

Good luck Emma, you're not alone, and no way should you ever apologise for

sounding off - you are facing a huge battle right now, pretty admirably too from

where I sit