Re: Re: Us again! - -Emma

[Guest guest]

Hi Emma,

Best of luck with getting those tests - the ree dx I think will be

especially useful for you if you could swing this one, it really could take

all the guesswork out of the equation and give you some answers sooner

rather than later. And the sooner the better obviously before gets

too entrenched back in the bad ole' seizure cycle that we all know so well

Another thought I had was that perhaps his age may be one where there is a

big growth spurt 'trying' to go on, and his body might busily be producing a

lot of growth hormone (also glucose producing, and they often have a surge

of growth hormone round midnight) without adequate cals on board to oblige??

If so, this could be placing him in a state of metabolic stress as well, and

cortisol might be out of kilter as well as a result (stress hormone). This

one is easily tested thru saliva, at midnight and then again first thing in

the morning (there should be a diurnal variation - 's didn't have the

required difference...). His follow up 24 hr urine cortisol test a few mths

later though showed he was getting back on track.

Even if your keto team have never used a ree dx to assess calorie needs

before (ours hadn't but our dietician agreed it was def worth it....my

friend whose son does the diet thru CHOP in the US suggested it for ,

they use it frequently to set cals when kiddies start the diet there) there

should be one somewhere accessible in your local hospital - as it is used

mainly to assess nutritional needs for bedridden patients in hosp to make

sure they are not malnourished or over fed.

Of course there has to be a curly part to even this test too though - and

this is, that if has been in any way catabolic, he would have been

slowly losing some muscle mass. When muscle lass is low, (blood creatinine

(sp?) test will also give an indication of muscle mass) metabolism is

slowed, and therefore his resting metabolic rate will possibly come back as

lower than it otherwise normally would. There lay our problem trying to drag

back out of his mess - because his body only recognised a fairly

sluggish metabolic rate (his muscle mass was quite severely depleted though)

the increase in calories we did was initially in excess to his daily 'keto

mimicing starvation need', so he was placed on too many cals at that point

to get seizure control back in a hurry, but the extra cals were a neccessity

to bring him back out of the catabolic state. A bit of a damned if you do,

damned if you don't one....

Also - if you do get the test approved, try and avoid any benzodiazepines

prior to the test, as these meds will also slow down metabolism and may give

a less than accurate picture of what his nutritional needs actually are.

The test is most accurate after a period of inactivity (at CHOP they do it

first thing in the morning as an inpatient, and the kiddies are not even

allowed to expend energy walking to the bathroom beforehand!) , we had to

fast and rest completely for an hr beforehand when he had his, like

we carried him up to where the test was being done rather than let him walk,

that sort of thing.

So, 's seizures in the past 24 hrs reduced because of what I

wonder - less benzo (or a completely diff one to valium that he is not 'used

to' so poss more effective at this point) , or more cals....

20 mgs clobazam is equivalent roughly to 10 mgs diaz, so 5mgs clobazam

only = approx 2.5 mgs diaz. So he probably wouldn't have that sedated hung

over effect this morn that the diaz with it's longer half life can give -

which of course can get set them in a more seizure prone state, more sedated

= more seizures. Nothing is bloody simple about any of this is it

That early morn glucose reading of 4.8 is very much in line with all of

his others over the past few days isn't it...so you def have a pattern going

on there. I know how hard it is to be sparing with the blood ketone strips

when trying to get cals etc adjusted, but at least you get the 8 per day on

script, we get none, so a very costly excercise down here...

I used to go overboard probably, but I went though a HEAP (and glucose

strips, but these we do get on script) when we found 's calorie

problem out, like testing as each meal peaked, then in between meals, and

then just before he ate so we could guage at what point he was actually

running out of cals throughout the day. After school was a def pattern with

him, glucose would be v low when he got home at 3 pm, and then it would

start rising again by about 3.30, with his next meal not due till 4 pm. So

he was def producing it from 'within' back then, no doubt with him

whatsoever.

Because of these results, we changed his meal spacing and allowance for

each meal, and right now the meals seem to be working well for him. We

increased lunch first off, then made his regular meals (total cals right now

1550) at 8 am, (400 cals) 10.30 pm, (75 cal snack) 12.30 pm (400 cals), 4 pm

(375 cals) and just before bed at 7.30 pm. This last of the meal of the day

before bed is currently 300 cals. We had never gone above 150 at bedtime

before, but we did this amount to try and satisfy any growth hormone

requirement he may have been going though in the night.

and his experience was a first for our dietician too, and she too

was wonderful in helping us to sort it out. It was a combined effort between

her and the endocrinologist actually, with whom we have a follow up appt

next week. Should be interesting....He was thrilled to see doing so

well in late Jan with his clear EEG, so I'm sure another 6 mths on he will

be even more pleased, though the growth slacking off again probably won't go

down too well...

Will wait to hear how it all goes, I do hope something gets uncovered and

that you can get him back on track again soon,

> Thanks for all this - I am printing your messages off and am

> armed with them ready for this morning!!! It is going to be fun

> trying to get some of these tests done. I agree with you - I

> definitely think this needs ruling out.

> Haven't been able to measure blood ketones because I have no more

> sticks to do it (I am only prescribed 8 at a time!) but have done

> urine tests.

> I gave him 5mg Clobazam (thinking at least this is better than 10mg

> rectal diazapam)after his dinner last night at 7.30pm. He was asleep

> by 8.15pm and had a seizure at 10.10pm.

>

> I tested for glucose last night after all his meals etc and at

> 11.15pm he was 4.2 and ketones were 8 (urine stick) - does

> better at 8 level ketone - he is far happier and better in himself

> when he maintains this level.

>

> He had a seizure at 11.38pm and then slept soundly until 4am when he

> had a seizure and then again at 5.50am.

>

> I took a glucose reading at 7am and it was 4.8. Urine ketones for

> is between 4 and 8 - which is usual for him on the urine

> sticks in the morning.

>

> He ate everything yesterday and I spoke to his dietician who freely

> admits that she does not have any experience at managing children who

> have been on the diet for 2 years - so we are learning together on

> this one. I explained all your suggestions etc and she agreed that

> it could be a possibility - so she suggested increasing his calories

> further yesterday as had so many seizures the day before. I

> gave him an extra 400 calories yesterday - she is in work today and

> is going to be speaking to the consultant etc. She is very good and

> will do everything to help sort things out. I felt a bit better

> about talking to her even though we are both learning about this!

>

> The only positive thing I can say at the moment (which is probably

> gonna come back to bite me!) is that from waking up in the morning

> yesterday to the same time today he has had a total of 6 seizures and

> 5mg clobazam - the previous 24 hour period he had 14 seizures and

> 10mg rectal valium.

>

> Thanks for all your help - hopefully I will get a load of tests

> done today to check things out - will post how things go, but right

> now all your advice etc has been what has kept me going and given me

> something to work on because I had just drawn a blank. I cannot

> thank you enough - even if this doesn't turn out to be the problem

> (although I think it could be) - I have certainly learnt a whole lot

> more.

>

> Emma. - mum to who has woken up in a fairly bright mood

> today!