Re: Bad/ - further info!

[Guest guest]

Sorry Emma, just got home and only just getting round to sitting down and

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

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

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???