Re: Bad/

[Guest guest]

You are wonderful - I just want you to know that.

s weight and calories - he is 34.3kgs (weighed last week) and

he is on 1860 calories - split between 3 meals and snacks per day.

Dietician says calories are fine. His height has not changed for a

LONG time and he has actually dropped a percentile - he always used

to be on the 95 - he is now lower than that - his sister is now

practically as tall has him (she is only just 8).

Have been using the multistix - nothing else has been showing up. No

ultrasound has been done on him (and getting him to have one should

be an interesting past-time - that is of course IF I can get one for

him - but am on to that one).

Rectal valium I don't have to use very often - only ever used it if

had got into a cycle of having a couple of seizures when he

was asleep, he gets tired because of the seizures and that causes

more seizures - so I would occasionally use it to break that cycle -

but only on occasions of illness when things took a dip with him. He

has had 3 this week each being 10mg - so obviously he has been

totally knocked out and is very wobbly the next day - but as soon as

the valium wears off he is having a seizure again (when he's asleep)

I have been holding off giving it to him - I hate giving him any

kinds of meds - it is usually when he gets to his 4th or 5th seizure

in a fairly short space of time that I will give it to him -

especially if he is post-ictal for a long time afterwards. His body

must be aching so much at the moment due to the seizures.

He is happy this morning and has eaten his breakfast, but is very

wobbly and just wants to lie on the couch.

Thanks for all your help - you are a bloody star.

I have printed out your message and am going to be working through

the other things and speaking to GP this morning.

Thanks again .

Emma. Worried keto-mum of who is making his mothers hair turn

completely white!!!!

> Sounds awful Emma, been there, and no way is it whinging, it is

bloody

> scary to see a slide in seizure control that you haven't been able

to figure

> out

> And as usual when something hits like the fan like this, it's

hard to know

> where to start to try and put it right.

> Some thoughts from my end, based on troubles we have had in the

past with

> (coming up 3 yrs on the diet now)....

> 18 mths after starting the diet (on a full 4:1 ratio) was when we

started

> having problems with him as far as calories are concerned (with

loss of

> previous daytime control) , has there been any period recently where

> 's height growth had slowed dramatically or where his

glucose levels

> have been rising after fasting? These were the first indications we

had that

> had started to go catabolic, and a ree dx (resting energy

> expenditure) test told us that unbeknownst to us he had been approx

300 cals

> short for quite a long time - scales hadn't helped warn us, as

during the

> catabolic process, metabolism goes screwy (er, deranged I think is

the

> medical term..) and fat distribution is affected, meaning fat is

> metabolised, and then stored, abnormally, so weight loss that you

would

> expect to see if they were so malnourished isn't reflected weight

wise.

> Muscle tissue is depleted, fat tissue is increased - end result =

same

> weight, just different body make-up. With of course, a decline in

seizure

> control, as the muscle burning process releases glucose, and when

there is

> too much glucose available, the body/brain will use it

preferentially over

> equally available ketones, and for most kids on the diet, this can

and will

> spell trouble. A dexa scan that checks muscle/fat distribution (and

bone

> density, so an added bonus if he hasn't had this monitored

recently) would

> be a way to check that he isn't heading into this type of

> metabolic/catabolic process.

> A lot of other processes (mainly endocrine) can cause abnormal

glucose

> readings as well - growth hormone, insulin, cortisol, and other

stress

> responses, so this would be one of the first things I would check

if you

> haven't done so already - a series of blood sugar levels over a 24

hr period

> to see if you can see any pattern.

> And obviously the bhb levls as soon as you can get the strips -

urine

> testing as you know is fine and dandy until something goes askew,

that's

> when the bhb readings come into play to make sure you are not

getting thrown

> off by what you think the urine tests are showing you.

> The change you did ratio wise, even though he improved intially,

do you

> think it is worth going back to where things were more stable for

now, and

> seeng how he fares back on a 4:1 ratio? But I think if this were the

> problem, you would have seen adverse results earlier on in the

piece after

> changing it....

> Do you have any multistix to see if there any indications on

there of

> something else going awry - like abnormal protein, blood, or

leucocyte

> readings? Were blood gases included in his last round of blood

tests?

> Carnitine levels? Vit A D and E levels? Has he had a renal

ultrasound to

> check for kidney stones? Their formation can def bring on

unexplained

> seizure activity, and often it is not until they show themselves in

other

> ways that you realise they may have been the culprit.

> Um, what else - meds - the emergency valium you have had to be

using, is

> there any way he may have formed a tolerance/addiction to this and

you are

> now seeing added rebound seizures as a result?

> I'll post again if I can think of anything else,

>

>

>

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

> From: " ketomum68 "

>

> > has had nearly 30 seizures this week and has been

totally

> > wiped out. From doing so very well and his seizures being

reduced

> > even more after the last diet change we have gone to this and I

don't

> > know why. I have exhausted every avenue, spoken to our

dietician and

> > consultant who has sent through a prescription for clobazam to

give

> > him before he goes to bed - I have busted my backside with the

diet

> > to get him off meds and after a year of being med free he has

been

> > prescribed clobazam to use in emergencies instead of giving him

> > rectal valium - its breaking my heart.

> >

> > He cannot go to sleep without having a seizure this week.

Everytime

> > my boy tries to sleep he has a seizure and that makes him more

tired,

> > its a vicious circle. I have given him rectal valium to try and

> > break it and it works for a few hours and then he has another

> > seizure. The valium then makes him wobbly on his feet and all

he

> > wants to do is lay on the couch. When he is awake he is having

some

> > absences but for the most part his is just laying on the

couch. He

> > is eating and his ketones are fine - he is registering 8 on the

urine

> > sticks. I can't do blood analysis because the bloody pharmacy

> > haven't got the monitoring sticks in yet - as they have only

been

> > available on prescription since 1st July they are having

problems

> > getting them - I am going nuts.

> >

> > I've been checking his temperature and there doesn't appear to

be any

> > illness looming and his temp is fine. He is not being sick or

> > appears to have a stomach upset. The food I have given him has

been

> > all the usual.

> >

> > He had had a seizure on Friday morning and it was very tight

and he

> > was post-ictal for quite a while. He went to his dads at the

weekend

> > and when he came back I was told that he had been quiet over the

> > weekend and he had had 3 seizures Saturday night but he had

> > brightened up Sunday afternoon. I put him to bed on Sunday and

he

> > had 7 seizures that night, 8 seizures Tuesday night, 6 Wednesday

> > night, he has had 3 during the day to day and so far we are up

to 5

> > tonight - those are the tonic clonic ones - the rest have been

> > absences.

> >

> > His dietician doesn't think it is to do with his diet otherwise

it

> > would have shown up before now and his ketones are fine. His

blood

> > results from the doctors are fine but they were taken a few

weeks ago.

> > He could be cutting teeth which is upsetting his system and the

> > weather is very humid and thundery here so that could be

upsetting

> > him as well, but all this we have gone through before and he has

> > never been affected this badly. This is the worse he has been

in the

> > two years he has been on the diet.

> >

> > A few weeks ago we dropped the ratio from 4:1 to 3.5:1 with a

slight

> > increase in MCT oil - he responded so well and we went nearly 2

1/2

> > weeks without ANY seizures, then we had 1 and then he went

nearly a

> > week without any more (he has averaged 2-3 per week on the

diet - he

> > was between 12-15 pre diet and on medication) - I was so

pleased and

> > he was so bright and happy - it was great.

> >

> > The consultant says that it could be just one of those things -

> > epilepsy is like that - it could be rough patch he is going

through

> > but has prescribed clobazam for me to give him before he goes

to bed

> > to try and stop him having a bad night - I really don't want to

give

> > it to him.

> >

> > I've not slept much this week and I am at the end of my tether -

I

> > don't know where to look next or what to try next. I am so

> > frightened - please can anyone else suggest anything - what

haven't I

> > looked into? I don't want to give him any medication until I

know I

> > have exhausted every avenue. I don't want to panic and I may be

over-

> > reacting (sleep deprivation doesn't help I know) - so I am

sorry if

> > this sounds like whinging - I am just very scared for -

I am

> > hoping that this is just a very bad blip and things will calm

down

> > and it is another learning curve for me.

> >

> > Thanks for reading.

> >

> > Emma. A very worried mum to - on keto diet since July

2002

> > and WAS doing very well.