Re: Bad/ - update

[Guest guest]

Yikes, those ketones are low aren't they Emma?? Because he had that

seizure beforehand though, you cannot know for sure if the seizure was

brought on by the low ketones, or whether the low level is as a result of

the seizure......

Reason being......2 diff schools of thought when ketones alter after a

seizure - the 1st is that the stress response from the seizure increases

glucose, which in turn lowers ketones.

2nd thought is that the physical act of the seizure (if a particularly

convulsive one) burns energy and therefore fat in keto kids, raising

ketones.

So pretty useless info really, being 2 such diff results that can

happen....but anyway...

The 3.6 glucose level here sounds okayish, (haven't had a chance to look

at your other post properly yet tho) but the way to see if he is now going

to go through gluceogenesis (either catabolic gluceogenesis from cals being

too low - from converting muscle tissue etc to glucose for nourishment or

non catabolic gluceogenesis where stored carb is used instead - usually from

having excess cals on board instead..) overnight is to retest in the early

hrs of the morn, preferably not at any time close to a seizure, as the

stress response to that can throw the readings out.

If that level of 3.6 was to go too much higher by morning, then the

assumption would be that he is possibly having a problem calorie wise. When

was catabolic, his glucose used to peak after his last meal of the

night, (ate at 7.30 pm say, glucose peaked at around 9.30) then drop down to

it's lowest point after the meal had fully metabolised by about 10.30-11 pm,

and then start climbing up again by midnight, so if he was say 3.0-3.5 at 11

pm, by midnight it would be round 4.0, then by 5 am it would be 4.5 - 5.0,

usually sitting around there at that level till he woke. (I used to test

again about 15 mins before I knew he was due to wake) So obviously without

eating during the night, this meant that all was not as it should be...

This trend in him was only picked up in PICU because of the constant blood

monitoring they do in there, I knew his glucose had been on the high side in

the mornings before eating for quite sometime before hand, but hadn't really

twigged as to why. The dietician was there in PICU the first morning this

pattern throughout the night was discovered, so we arranged an urgent ree dx

test to check his calorie requirements, and that was when we discovered the

300 cal shortfall. A huge shock....but in a way comforting to see why it had

all hit the fan so badly with him. His body was in a full blown state of

metabolic stress from the catabolism and malnourishment, so it is no wonder

he had got so bad seizure wise

Unfortunately though, he was in such a bad way seizure wise by then, he

still needed a midazolam infusion to break the cycle he had fallen into, so

began his next nightmarish wean off the infusion onto high dose benzos. So

we had discovered one major diet problem, only to replace it with a major

med problem, as that weaning from that infusion spelt the beginning of

's intolerance to benzos fullstop, a cycle we were powerless to stop

for a looong time afterwards. 20/20 hindsight and knowledge

I'll go back to your other post soon, but in the meantime, I hope this one

is not too late for you to see, so that you can get some readings overnight

to look at to see if you can find a pattern.

PS - in no way looked malnourished at that point, quite the opp,

because the abnormal fat storage had given him a 'fuller' face and tummy,

but his arms and legs looked much the same as they always had done, on the

slim side. He was a 97th percentile height kiddie when he started the diet

in sep 01, by this point 18 mths later in PICU he had dropped one and a half

height percentiles, down to about the 80th. The he crossed another down to

the 75th, recently between the 50th and 75th, and we are still struggling to

get him back up again. This process he went though takes a very long time to

recover from. Like a yr at least we were told, but obviously his was a

pretty extreme case (as is usually the way with us, sigh..) Er, still

waiting for that growth.....

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

> Hi ,

>

> fell asleep about 10.15pm after having his extra snack at

> about 8.30pm.

>

> He has had a seizure at 11.35pm and I have used the blood monitor to

> test again at 11.55

>

> Glucose was 3.6

> Ketones 1.2

>

> Any thoughts would be appreciated.

>

> Emma.