Questions that we cannot not get answered

[Guest guest]

1/ does anyone use any other method of checking the ketone levels than

with the keto sticks, is there a personal blood tester we can buy.

2/ does anyone know whether water quality (acid or alkaline can change

the ketones, we checked the water quailty a few times when our son

was fitting earlier this year after we had seemed to stabilize

him after we had been on the diet for a few months, how we found that

the water was to alkaline was i changed our water in the fish tank and

tested it. we then tried tank water(rain storage) and it seemed to

help with the ketones to bring the levels up and fitting down, I

should say that it was raining a lot and the water was heavely

treated.

3/has anyone ever looked at the radioation from the power lines and

other sources to see whether it has effected their children, we have

found that heavy use periods of use seem to make fitting worse,

drining under extreme high voltage lines also can cause fitting.

Al these questions have been put to the medical, institutes for

learning, CSIRO in Australia and any other organisations that i felt

would know or be interested but they were not.

[Guest guest]

Hi - below in ***s, I'll have a go.....

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

From: aaacbanksy

1/ does anyone use any other method of checking the ketone levels than

with the keto sticks, is there a personal blood tester we can buy.

**Yes, MediSense make a home blood test kit - manufactured mainly for

diabetics (it is a dual glucose/bhb kit). Being a fingerprick test, it gives

capillary readings, (blood is 'diluted' by plasma etc) so get a venous

equivalent, you add approx 30% to the reading. Not 100% accurate but personally

I think it is still preferable to the urine ketone measuring method.

The customer contact phone number for Australia that my pack has on it is

1800 801 478. The distibutor in Australia I think is Abbot Diagnostics division

of Medisense products, in - ABN 95 000 180 389.

I am in NZ, but I do know of Australian families who have purchased the kit

over ther and used it successfully to help finetune the diet.

2/ does anyone know whether water quality (acid or alkaline can change

the ketones, we checked the water quailty a few times when our son

was fitting earlier this year after we had seemed to stabilize

him after we had been on the diet for a few months, how we found that

the water was to alkaline was i changed our water in the fish tank and

tested it. we then tried tank water(rain storage) and it seemed to

help with the ketones to bring the levels up and fitting down, I

should say that it was raining a lot and the water was heavely

treated.

**Were his acid alkaline levels tested through blood gases or through urine

ph readings? If by urine, the actual water content/quality may be giving a false

type reading, but if you found this result through blood testing, it would not

surprise me.

We have found a correlation with ph and ketones, (and therefore seizure

control) in the past, a bit of a chicken before the egg situation though, like

does a more acid state in the body come as a result of higher ketones, or does a

more acidic state facilitate the ketone production.....

I think both happens here, as when was on ACTH for a brief period in

hosp in November, nothing we did could bring his ketones up. ACTH is an alkaline

inducing steroid, and basically his body was pushing it uphill to stay in

ketosis - he dropped down to 0.7 as a blood ketone (Bhb) reading during the peak

of the course. ACTH is also glucose producing, so he had a double whammy to

contend with struggling to stay ketotic. Even when glucose levels dropped,

whilst his ph was alkaline, his ketones stayed very low.

I have also found that the types of food we give do affect his blood

ph level - like a lot of citrus fruits etc will see a more alklaline reading,

and whether or not his ketones are affected at the same time, we have in the

past seen seizure breakthroughs when he stays in an alkaline state.

Not nowadays however while his seizure control has been so stable for a long

period, (8 mths seizure free now) but last yr and the yr before, he was

definitely sensitive to changes in his body's ph - like more easily 'tipped'

back into seizure mode as a result.

3/has anyone ever looked at the radioation from the power lines and

other sources to see whether it has effected their children, we have

found that heavy use periods of use seem to make fitting worse,

drining under extreme high voltage lines also can cause fitting.

***No, not personally as far as whether it changes 's condition on an

ongoing basis, but I have read bits and pices on the link betweeen the two.

I did look briefly into it as a possible cause of 's seizure syndrome

fullstop though - my husband is an electrician, and of course the thought has

crossed my mind on occasion, the 'what if ' his close contact with power sources

over the years in some way contributed to one of his offspring developing

epilepsy, but...I could question anything and everything going down that road of

the why's, so I guess I closed the book on that one....

Al these questions have been put to the medical, institutes for

learning, CSIRO in Australia and any other organisations that i felt

would know or be interested but they were not.

**Well the 1st question should have been made easily available to you, and

it is a shame you had no one to point you in the right direction for accessing a

home test kit. We kind of stumbled across the use of the Medisense kit for

's diet finetuning back in Dec 01 - my father in law is a diabetic, and on

one of his visits to the diabetes centre he saw a pamphlet advertising the 'new'

dual diabetes kit - tests glucose AND ketones. He rang me that night and asked

if the bhb produced by diabetics would be the same as that produced through

using the ketogenic diet - of course the answer was yes, so we had a kit in our

hot little hands the very next day. The Medisense rep also visited our hospital

once they knew they had another potential 'sale point', but back then there were

very kiddies on the keto diet here, well, still not a huge amount these days

either unfortunately...

Question #2 re acidity/alkalinity - well the water issue I am not too sure

on, but the body's ph role in maintaining seizure control on the diet is one of

those 'for some kiddies it seems to have an effect, for others, not'. Like

calorie restriction, automatic gluten restriction, those types of areas - many

diff mechanisms by which the keto diet seems to be successful, for some kids one

of these, for others, a combination...

Question #3, an epilepsy research type question that there just doesn't seem

to be time or money for those in the know to spend. Drug companies are one of

the main players in the financing field - the 'why things happen' doesn't come

up very far the priority list from what I can make out, certainly down below the

'lets inject money into new drugs that can hoepfully mask the symptoms yet not

find the cause' one