Re: Us again! - Shelly

[Guest guest]

,

Thanks for your kind offer, but I have got another prescription for

them today.

Am about to post an update on in a mo.

Thanks again - you have all been such a big help during all

this.

Emma. Mum to who seems brighter today.

> > Sorry Emma, just got home and only just getting round to

sitting

> down and

> > checking keto messages again, down below in ***s ...

> >

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

> > From: " ketomum68 "

> >

> > After my posting to you last night slept without

seizures

> > until 6am this morning - I had given him an extra snack last

night

> > which is 3.5:1 ration of 150 calories - his total calories for a

> > normal day is 1860 - he is quite a tall boy although he has not

> grown

> > taller in the past year and his weight is 34.5 kgs.

> >

> > **That would have our endocrinologist tut-tutting over here, it

> is he that

> > gave the dietican (and me) a bit of a dressing down about the

fact

> that no

> > one had taken enough notice of the fact that 's height had

> completely

> > stopped. Slowed growth after a period of time on the diet is a

> known side

> > effect, but stopping altogether is apparently not. That guide for

> > pediatricians written by Freeman (do you have this?) gives graphs

> of growth

> > rate changes when on the diet as compared to when not, and none

of

> them have

> > height as stopping completely.

> >

> > >From 6am to 7.30am he had 4 T/C seizures.

> >

> > 8am Glucose was 4.5 and ketones were 1.6

> >

> > **So at 11.55 pm the night before, glucose had been 3.6 (and

that

> was poss

> > slightly elevated temporarily after the seizure) and by morn it

had

> risen to

> > 4.5 without eating in between? The fact he had those TCs

beforehand

> though

> > may unfortunately have skewed the results again. Did you manage

any

> tests

> > through the early hrs of the mroning before he had those seizures

> that

> > started at 6 am?

> > Those blood ketones are just not high enough for seizure

> protection for

> > whatever reason are they

> >

> > >9am breakfast

> > >11.15am snack

> > >1pm lunch

> >

> > >3.25pm glucose 3.5 and ketones were 4.6

> > >3.30pm snack

> > >He had a sleep between 4.30pm and 7.15pm and in this time he

had

> 2

> > small T/C seizures and 1 very tight one.

> >

> > ***What may be happening in these daytime sleeps, is that

> although his

> > blood levels at that time of day are in an acceptable range, he

> might be

> > having them because he is in irritation mode fullstop, and

> therefore more

> > prone to them breaking though in the vulnerable sleep stages.

That

> glucose

> > of 3.5 and bhb of 4.6 are just about where I aim for with -

> bhb maybe

> > a bit high when comparing to a vein sample though, which would

take

> it up

> > above the 5.0 mark. For some kiddies this is where they need to

be,

> but for

> > , that would be a little on the high side.

> >

> > >7.30pm dinner

> > >8.30pm glucose 4.6 and ketones 2.6

> >

> > **So why that big drop in ketones from earlier on when they

were

> up at

> > 4.6?? It is almost like giving him meals are lowering his

ketones??

> > Unless...during that time of 'fasting' between 3.30 and 7.30, he

> ran out of

> > cals, (though if he was sleeping rather than active this doesn't

> really add

> > up does it, unless those TCs burnt thru a lot of cals??) and

rather

> than

> > burning body fat, (IF he is in a catabolic state, this is what

> would happen)

> > he used some muscle tissue, producing glucose, which dropped his

> ketones?

> >

> > >9pm he had a t/c seizure - very tight again.

> > >9.35pm I have him an additional snack of 250 calories today.

> >

> > >10.25pm, 11pm, 11.30pm and 12.15am - he had a t/c seizure -

all

> of

> > them very tight.

> >

> > **This run of seizures is worse than usual after adding a whole

> 250 cals?

> > Maybe that was too much of an increase at once?

> >

> > >12.40am glucose 4.0 and ketones 3.7

> > >12.45am t/c seizure - again very tight.

> > >If he has any more seizures tonight I am going to have to give

> him

> > 10mg rectal valium - he is so tired. He is also quite clammy

at

> the

> > moment. He is not running a temperature at all and hasn't done

> all

> > through this, but every time that boy tries to sleep he has

> seizures

> > at the moment and I can seem to break the cycle.

> >

> > ***Yes, been there, and I hated it!!! Felt like couldn't

> win either

> > way

> >

> > >I will test again in the early hours - but I never know when

the

> > seizures will arrive. I would appreciate your thoughts on the

> above.

> > Thanks so much.

> > Emma.

> > P.S. Couldn't post this earlier - Yahoo not available -

typical!!!

> > had another seizure at 1.40am and I had to give 10mg

> rectal

> > valium. I have tested bloods again this morning (considering he

> > started having seizures around 6am yesterday morning 5.45am

today

> > glucose 4.5 and ketones are 1.6. Any thoughts!

> >

> > ***Ketones way back down again by morning, and glucose has

risen

> again

> > after fasting....and that was after no seizures I take it, so not

> from a

> > seizure stress response? Like the valium stopped any more for the

> rest of

> > the night/early am?

> > If he has been calorie deprived, it will take a while for this

to

> > 'correct' because when I said before the body goes thru a period

of

> > metabolic derangement, this means that what you think is

going 'in'

> is not

> > neccessarily being metabolised in that fashion. For example, you

> may be

> > giving say 30 gms of fat with a meal, but he may not be

metabolsing

> all that

> > fat, some may not being absorbed, but stored instead, and the

same

> with the

> > protein and carb.

> > Obviously you need to find out for sure whether he is in this

> catabolic

> > process or not - becausee unfortunately the process of

gluceogensis

> where

> > non-caloric glucose is produced and used, can also occur when

> calories are

> > excessive, and so it can be hard to determine which way the

cookie

> is

> > crumbling....However - I wouldn't expect his height to have been

at

> a

> > standstill the way it he was on excess cals instead.

> > So if I were you, I would ask for an urgent ree dx test (to

> accurately

> > measure his correct caloric needs) and a dexa scan to see whether

> his body

> > looks to be catabolic - ie with uneven or abnormal muscle/fat

> distribution.

> > There are also some endocrine tests like growth hormone,

> cortisol, inuslin

> > etc that might tell you if anything metabolic/endocrine is out of

> whack to

> > explain the rise in glucose overnight.

> > Mon morn there shortly I think? Let me know if you need any

more

> info on

> > 's history to pass on to your Drs, as even if it is not the

> same thing

> > happening with , I think it def needs ruling out???

> >

> >

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

last

> resort! "

>

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