Re: (again!)/

[Guest guest]

Yes, I did start thinking that it had switched back again - I

couldn't believe that the ketones had dropped and glucose had gone up

that quickly. He was quite bright about 6pm too - actually got off

the couch to come and find me - was very wobbly but at least he was

up!

He is definitely not overweight. is very solid, very strong

and lean. He was 9lb 14oz when he was born and on the 97th

percentile - always was up until the start of the diet - he is now on

about the 60th for height and around 50th for weight.

I was so pleased with the 5pm reading and I am thinking that he is

switching back again in the evening - he definitely has not got a lot

of spare flesh on him - he is not looking thin but there is no excess

fat on him.

Plan of action for tomorrow food wise is to put him on his original

allocation of 1860 (before this crap hit the fan) but with LCT not

the MCT oils (which were reducing his calories without me knowing

anyway - great!)

He is sleeping at the moment but after the last update I posted he

had another seizure at 11.50pm and I gave another valium - it was a

hell of a lot earlier than I would have liked to have given it but I

could see the pattern beginning to form again and the first valium

obviously didn't stop it. I am monitoring VERY closely now because

he has had 20mg of rectal valium, his pulse rate, bloods, breathing

etc. I hope this will give him a break for a few hours as I really

don't want to give him any more if I can possibly help it, not for a

good long while anyway.

Thanks again - you are keeping me sane! When I get the first

s Friends Keto Centre up and running, I will be putting a ree

dx testing machine on the shopping list!

Speak to you later (no doubt!!!!!)

Lotsa love

Emma. Mum to (who will please God get some uninterrupted

sleep!)

> Hi Emma, just had a quick read of earlier posts that came in over

my night. I started to think things had turned, but read on, and I

see from this one, it didn't last

> If ketones have dipped like that after a day of not eating, it

might mean that he has now switched to tissue burning mode agian (ie -

glucose inducing) now rather than fat? Looks like he got to a good

place after not eating for a 'certain period' (ketones 4.3, glucose

3.8 at 5 pm), then started tipping the other way? Is this what you

are thinking too?

> With his recent weight gain you would think he would carry on

trucking thru strored fat to keep him going when he hasn't eaten, but

if his metabolism is still out of whack he may not be following all

the rules.....

> The weight gain he had - although probably too rapid keto/seizure

control wise, was it actually 'needed' body wise, like has it made

him appear overweight, or is he looking around about right body wise

now? What I'm trying to get at, (sorry, I'm getting there is -

does he look like he has adequate fat on his frame to burn for fuel

in the absence of calories?

> If he does look like there is enough there (which

certainly did have but the fat just 'wouldn't shift') and this isn't

happening, then it is basically saying I guess that he is not

following the process of ketosis on the diet to a T. No surprise to

you I'm sure....but at least it is probably showing you that there is

still a diet/metabolism cause for what is going on with him right

now, not just 'one of those unexplainable things'. Prob little

comfort right now, but it used to make me feel a bit better about it

all...meaning once you can get on top of it, there's no reason you

can't him back on track seizure wise.

>

> Anyways...Freeman's book says that after a 24 hr fast, 'if

ketones rise, we will reduce calories'. Doesn't go into why, and why

the opposite happens in that part of the book - but if they do keep

rising it is probably because there is still adequate fat to keep

burning, meaning the child is likely to be overweight......if they

don't keep on rising throughout that 24 hrs, then I am assuming it is

because there isn't enough surplus body fat to sustain them for that

long, so not overweight, and muscle/tissue breakdown is therefore

used for fuel instead.

> If glucose had gone up high from the beginning of the fast, then

slowly gone down - then this would prob be depleting glycogen stores

on board from excess cals, like say when a kiddie first starts the

diet, and then the ketones start to appear, and away they go...

> None of this relates though to the possibility of the body being

in a state of metabolic derangement after a period of prior

catabolism...where all the rules change both in metabolism/absorption

of calories, and also the conversion of body fat back to either lean

muscle mass or to ketone bodies.

> I am desperately trying to remember what our endocrinoligist said

about this process of 'rebuilding', and not getting very far, and his

actual keto-diet knowledge was very limited, so it was a matter of

him and our dietician pooling resources to come up with what

needed (in conjunction with the ree dx result).

> The reason it gets even more complicated, and therefore possibly

requiring an endo's input, is that the rise in glucose and ketone

plummet down around 11 pm may also be from some growth hormone being

produced overnight. He hasn't grown for ages, he got a recent period

of enough calories to start again, and his growth hormone is probably

jumping up and saying 'me first'.

> Upshot - I'm not really sure what your next move should be

> He had a good day after not eating - probably depleted excess

glycogen stores from previous excess cals, got him back on track for

a while. Then he seems to have switched back to catabolic mode at the

end of the day (they can tip easily back in and out for quite some

time as you know), so would a keto meal at the end of the day before

sleep helped prevent the dip again? I'm not sure, and how on earth we

are supposed to guage when and if this is how to juggle him back out,

I'm not sure about either.

> I wouldn't let the seizures get to the rate they were the other

night of one per hr, this may be a night where you have to cover what

has now happened glucose wise with the valium (hoping of course the

stuff actually does it's job...) and hope that from tomorrow you can

put him back to regular keto meals with no fasting and see some

stability ketone/glucose wise.

> I would give my right arm to know what his metabolic calorie

requirement is showing right now, as would you, I know you would be

feeling a lot more cofident about what sort of calorie total to give

him tomorrow

> Perhaps very very regular blood readings throughout the day can

be your guide - like as soon as you see glucose start to increase a

bit during the day close to when his next meal would be due - get a

keto meal into him, wait till it peaks then starts to fall and when

the ketones start to lower and glucose increase again - give him

another one, and so on...

> A crude method of trying to suss out what he actually 'needs'

keto wise while he is going though this, but it may be enough to stop

any catabolic process switching on during the night?

>

>

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

> From: ketomum68

>

>

> had another seizure at 9.15pm and I gave the rectal

valium,

> unfortunately he then had another seizure at 11.05 not even 2

hours

> after the valium was given - I may have to give it at 4 hourly

> intervals - I just need to see how regularly the seizures are

going

> to come this evening.

>

> I have done another test at 11.15 (I know it was long after the

> seizure he had but I wanted to see what was happening) the

readings

> were Ketones 1.3 and Glucose 4.9 - so in the space of a couple

of

> hours the ketones have plummeted and the glucose has gone up

> substantially. I have a feeling it is going to be another long

night.

>

> Anybody throw any light on this?

>

> Emma - Mum to who is have a really crappy time at the

moment.

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