Re: blood ketones question

[Guest guest]

The range of optimum blood ketone level varies individually, like some need at

least 4.0 for seizure control, up to even 6.0 and above, yet others do better

with lower levels.

Yes, the urine levels can change a lot in between bladder voids, depends on

what the 'mix 'was when last tested. This is why the morn reading in particular

(if the child is continent thru the night) is often quite inaccurate - like a

urine reading of say '8' in the morn on waking after having gone to bed with a

bladder still containing '16' evening ketones would be showing an artificially

high result. If the bladder had been emptied in the middle of the night - like

so as to clear the high ketones from the night before, chances are that the '8'

morn reading would actually be more like a '4' or even lower.

Re the blood ketones, does best with a bhb of around 4.0, but others

may find that reading too high or too low.

That figure is after adding on the percentage to allow for the lab test vein

equivalent though (as fingerpricks at home are capillary, which is diluted with

plasma etc), so on our home kit we like him to stay in between the low to high

3.0's, if he goes above this (which he often does..) we see behaviour in

particular go downhill.

Since having full seizure control from Dec last yr, we haven't actually seen a

bhb of lower than 2.5 - but I haven't tested regularly for quite some time, more

as a one off now and then to make sure he is still in the ballpark range of

where he seems to do best. When he was still having early am seizures last year,

it was v common to see a blood ketone reading with him of around 1.5 on waking,

which obviously for wasn't quite high enough, but then he had other

issues like med problems going on at the same time - so I can't really say with

certainty that this was his only problem back then.

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

From: natashagainford

Two days ago I cheked ph's urine ketones after his afternoon

sleep and they were 1,5.I could not understand what I did wrong and

recheked his ketones in 1/5 hour just to be sure.This time the

result was 8 ! I knew urine test was not very accurate ,but what a

difference! I decided to use blood ketone monitor from time to time

and when urine test is doubtful( I has already had Presision extra

monitor,but I was told in hospital it was not very accurate for

glucose monitiring).So yesterday I checked and blood level was 5,4

at bed time(16 urine),so it was high/high.Despite that ph had CP

seizure yesterday.This morning I cheked and blood level was 2.3 and

urine was 8 ,normal/high,later I checked again and blood level was

4.5.My question is what is the best level in the blood for seizure

control,how much is too much how little is too litle? How much

should I rely on urine test? The difference can be significant I

suppose.

Natasha, mom to 2 years old ph,suspected SMEI/Dravet's

syndrome,keto kid since August 23d 2004