Re: carolyn

July 1, 2004

I have been reading your messages Carolyn and my heart goes out to

you. I thought the situation was bad in the UK, my God, it sounds

even worse in France.

I have read the replies and would also suggest you get the Keto Diet

book and give it to the DOCTORS to read!

Phone/e-mail Hopkins yourself as well and get advice.

I can't believe you are not even getting the ketostix to test

eals urine - if you want them, I will send you some - go onto

www.matthewsfriends.org and through the 'contact us' part, send me an

e-mail with an address to send them to. I will quite happily put

them in the post to you first class tomorrow. It's totally

outrageous that you can't even test his urine. I will also send you

some KetoPAG (Ketogenic Diet Paediatric Advisory Group) fact sheets

on the diet, if you want them - these information sheets have been

written by doctors/dieticians (this group includes the team at Great

Ormond Street Hospital in London which is the main centre for the

diet in this country). Let the doctors see these sheets - if they

want to enquire about KetoPAG they can contact either me or Great

Ormond Street - there is a conference going on in November which is

for doctors which they could attend IF they wanted to know more about

the diet and how to do it. I know this will not help you NOW, but it

may make things better for you in the future.

I am so glad that you are decreasing the phenobarbitol - I REALLY

hate that stuff - it was the one medication that I refused point

blank to even consider for .

Thoughts and prayers are with you. I know what it is like to be in

hospital so much and just watch your child fitting, it's

heartbreaking.

Take Care.

Emma .

> Suzan,

>

> I read and read again your mail and a lot of things make me

furious against the way they act here about this diet!

>

> I don't even know at which rate is aël on cetosis, no

urines control, no blood control since we left hospital!

> what's Blood ketone monitor? Where can I find one?

> Is it better than urines ketones control?

> None control is programmed!

> So I'll go to the doctor and ask for a prescription, a blod one!

Could you tell me what exactly I have to ask for this prescription?

>

> Thank you, I'm really sad to see my angel so bad...Doctors sait

there nothing to do else because they don't know the disease but I

am his mum and I can't accept that!

> Help me please

>

> Carolyn, aël's mum who has a lot of seizures during the

night ant the morning!

>

> Carolyn - ael and the keto diet book

>

> Hi Carolyn,

> K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs

diazepam,

> that is a LOT of benzodiazepine for a nearly 6 yr old to be on

per

> day.... was 6 yrs old on that diaz dose at one point too

(his was

> decreased from a massively ridiculous dose of 60 down to 30

mgs), and he

> continued to have toxicity induced seizures till we got him

down to below 20

> mgs, and that was without phenobarb (can be equally sedating)

in the

> equation.

> A 5:1 ratio is way too high unless there is a specific reason

they have

> used this - I see you have been advised on here to get Dr

Freeman's book,

> and I second that. Your Drs need to be made aware that they are

potentially

> aggravating his condition (ie -seizures!!) with 2 strong high

dose meds in

> combination with a very high ratio.

> The book's actual title is 'The ketogenic Diet - A Treatment

for

> Epilepsy'. I have the 3rd edition here, published in

2000by 'Demos'.

> Authors are Freeman (Hopkins hosp in USA),

Freeman and

> Millicent .

>

> Basically to see if they have his diet in a ballpark range

though, total

> calories for a 6 yr old are usually calculated at 65-68 cals

per kg of

> bodyweight, including protein at 1.1 gm per kg. If possible,

with meals

> spread fairly evenly over the day, and most find that a snack

right before

> bedtime helps keep ketones up overnight.

> If he is under or overweight for his height though, the total

calorie

> figure will probably be amended to aim towards his ideal

weight, and the

> ratio should then be adjusted accordingly. (for example - if

aiming for a

> lower bodyweight, less calories will be allocated, meaning body

fat will

> probably be burnt as the weight is lost, so a lower ratio would

be required

> to prevent excess ketosis, with the opposite applying if weight

gain is

> desired)

> Most kiddies are started out on between a 3.1 or 4:1 ratio,

moving up or

> down depending on how easily they produce ketones and how their

seizure

> control goes.

> Urine ketones on the diet usually range from 4-16, blood

ketones (if you

> can puchase a blood ketone monitor) are more accurate however.

With that

> high ratio I would suspect he has fairly large ketones, and if

so, his blood

> gases (blood ph bicarb, base excess etc) should also be checked

to make sure

> he has not gone into metabolic acidosis. Glucose levels should

probaby be

> done regualarly too, as he is not getting very much in the way

of

> carbohydrates.

> Can you persuade anyone there to phone or email Hopkins

hospital and seek

> advice, which I believe would actually result in confirmation

that he is

> probably toxic on a combination of a high ketogenic ratio and

medications.

> Weakness and paleness (usually with dark circles round the

eyes), increased

> seizures, unsteadiness, legarthy, slurred or slowed speech,

with or without

> vomiting, were 's toxicity signs.

>

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

> From: " caronath "

>

> Thank you for this mail, that confirms what I thought!

> I 've decided to decrease phenobarbital because Nath was

very bad with a

> lot of seizures like an overdose!!!!This night he's had 3

seizures...I'll

> see...

>

> Here in France Drs don't believe in keto diet, it's really

a pity!

> aël is nearly 6 .

> At hospital they have just check if he's on ketosis and

that's all, I

> haven't got any numbers...I don't know neither why he's put on

5:1

> ratio....I'll try to recalculate every thing to check by myself

the doses

> he must have...I'm looking for every little advice and

information to

> calculate the diet.

>

> For the clonazepam 30 drops equate to 3 mg .

> In the last 3 weeks spent at hospital they increased

clonazepam and they

> put phenobarbital ! But still seizures every night...

> Nath is very weak, white I'm worried.

> Thank you all for your responses

>

> Carolyn

>

> " The Ketogenic Diet....a realistic treatment option, NOT just

a last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

professional keto team!

> Subscribe: ketogenic-subscribe

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unsubscribe

>

July 25, 2004

Carolyn,

Looks like we are in a similar boat at the moment - had 14

seizures yesterday and is totally wiped out today. I had to give him

rectal valium to try and stop them last night.

I phoned local hospital this morning and GOSH - was passed from one

to the other basically and the local hospital did not want to know -

apart from if I wanted to bring him in they would have a look at him

and try and stop the seizures - when I asked what with they started

listing a load of drugs - I decided to keep him at home - I can do a

better job of monitoring him myself and when I mentioned that I think

he could be catabolic they suggested loading him up with carbs

because that is what they would do. I hung up at that stage.

knows more and is more helpful than ANY doctor I have spoken to this

morning.

I can appreciate how frustrated you are feeling and like you, I am a

single mum too. It is very frightening, especially in the middle of

the night when it is just you and your son and there is nothing you

can do but watch these seizures keep coming. I do really feel for

you.

I sincerely hope things improve for you and ael and keep us

posted - I am a little behind on things at the moment because of the

problems I'm having with .

Take Care, love and prayers to you both.

Emma - mum to a very poorly at the moment.

> > Hello,

> >

> > aël is back home but he's still got seizures.

> > I'm reading mails and I'll write more later.

> > Nath is under Trileptal, Rivotril

> > Doctors don't know about keto diet !!!!it's amazing!!!They

said

> it doen't need to be contrled with keto sticks urinary ant not

at all

> blood control!!!!!!!!!!!!!!!!!!!!!

> > We're back home but i'm scared of the future even just of

> tomorrow...

> >

> > Carolyn, aël's mum

>