Re: Bad - Need Help Please.

[Guest guest]

Emma, I hope things improve for soon, I don't understand either what

goes wrong, one moment they are fine and the next boom it's constant

seizures!!! HANG IN THERE!!!

I've noticed a different w/ stella during hot temps, we are at 90degrees

here in seattle, and w/ it comes loads more drops and mini jerks, the docs

have no concrete evidence to confirm this, just my suspicions. Does he seem

more lethargic than usual due to the weather? Stella goes glassy eyed and

seems distant (long time responding to us) when this happens we know we're

in for it.

I wish you the best of luck, sorry no suggestions I think you are way more

a pro at this than I am.

--

-mom to Stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

is almost 10 and a happy healthy girl.

[Guest guest]

Thanks for the reply . Yes he is more lethargic and glassy

eyed when the weather is humid and sticky. It is not particularly

hot here but it is very 'sticky'. Epilepsy really is the hell of all

conditions at times.

Thanks for the support - I can't tell you how welcome it is - a place

to go where people understand what you are on about and don't think

you are completely nuts when talking about the weather having an

effect on your child. I sometimes feel like a complete loony tune at

times.

Take Care and all the best to you and Stella.

Emma. x

> Emma, I hope things improve for soon, I don't understand

either what

> goes wrong, one moment they are fine and the next boom it's constant

> seizures!!! HANG IN THERE!!!

> I've noticed a different w/ stella during hot temps, we are at

90degrees

> here in seattle, and w/ it comes loads more drops and mini jerks,

the docs

> have no concrete evidence to confirm this, just my suspicions.

Does he seem

> more lethargic than usual due to the weather? Stella goes glassy

eyed and

> seems distant (long time responding to us) when this happens we

know we're

> in for it.

> I wish you the best of luck, sorry no suggestions I think you are

way more

> a pro at this than I am.

>

> --

> -mom to Stella, 5years old, started keto diet May 10th 2004

still

> waiting to be seizure free. Also on Lamictal, epam and

Diamox. Anisa

> is almost 10 and a happy healthy girl.

[Guest guest]

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 -----

> 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.

[Guest guest]

Emma,

what about going back up on the ratio?

Nicola

[Guest guest]

Emma,

what about going back up on the ratio?

Nicola

[Guest guest]

Emma,

what about going back up on the ratio?

Nicola

[Guest guest]

Hi Nicola,

Thought about that one, but he has been on the lower ratio for a few

weeks now and he was doing BETTER than before - I think if the ratio

was wrong for him we would have seen more seizures straight away. I

am looking into s suggestion of his metabolism going a bit

screwy.

Hope things are well with you guys. I will contact you shortly about

our get-together in Devon.

Need to get on the phone to hospital now.

Take Care

Emma.

> Emma,

> what about going back up on the ratio?

> Nicola

>

>

>

[Guest guest]

Hi Nicola,

Thought about that one, but he has been on the lower ratio for a few

weeks now and he was doing BETTER than before - I think if the ratio

was wrong for him we would have seen more seizures straight away. I

am looking into s suggestion of his metabolism going a bit

screwy.

Hope things are well with you guys. I will contact you shortly about

our get-together in Devon.

Need to get on the phone to hospital now.

Take Care

Emma.

> Emma,

> what about going back up on the ratio?

> Nicola

>

>

>