Re: Re: - weight gain/catabolism

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Jay wrote:

> Hi Emma,

> Sorry to hear this. I am in the UK (Bucks) too.

> My son Rohan (15 yrs not on the diet anymore)

> went through the same thing as when we

> first went on the KGD. He'd been on the RadCliffe

> diet which is with MCT oil and about a month before

> we started the KGD his Epilim was stopped in hospital.

> Then coincidentally with the start of the diet proper

> Rohan had very high ketones and started having sleep-sz

> every 20 mts.

> We were so worried because rectal diazepam didn't work

> and rushed him to hospital after he'd had about 10 sz.

> He woke up then, so was OK but when he fell asleep in

> hospital he started the awful sz again. They gave more

> r.diazepam that didn't work.

> Then started him on Epanutin the next day. The second

> night wasn't as bad but he still had regular sleep sz.

> Then 3/4 of the original epilim was put back and the sleep

> sz reduced and stopped over 2 nights.

>

> I think somehow the problem was being too ketotic.

> I know ketones of 8 are not high for most kids but

> Rohan always did better on low ketones.

> I wonder whether cutting down calories raised the

> ketones too much too? The dr.s at Wycombe

> General or the keto dr. (central middlesex) didn't give

> an explanation for the regular sleep sz. We later on

> managed to wean off all the epilim but had to keep

> reducing the ratio with each drop in dose. That's why

> I think (at least in Rohan's case) that lower ketones

> help with such sz.

> Did you wean of any AEDs within the last

> month or so?

>

> I know very well the frustration of not being able to

> contact your child's dr.s and the others not wanting

> to give advice because they know nothing about the

> diet!

> Good luck with contacting your Dr. Think about lowering

> the ratio if it has gone up recently.

> Saro...Rohan's mum

>

> ketomum68 wrote:

>

>>It is 4.20am in the UK at the moment and I have had to watch my boy

>>fit every half hour from about 10.30pm last night and right now I am

>>gripped with this panic that for some reason this diet may have

>>stopped working for him and there is nothing left for us to try. I

>>know I am probably being totally irrational and over the top at the

>>moment (tiredness not helping here folks) but I don't know what else

>>to do right now and I'm afraid that I am having to 'unload' to you

>>guys.

>>

>>I read the Freeman section on the calories and I thought about

>>fasting him for 24 hours. To be quite honest, I don't know what to do

>>for the best right now. Options I am thinking through at the moment

>>are:

>>

>>1. Put him back to the calories he was on before this kicked off

>>i.e. 1860 with a 100 cal increase and using LCT oils instead of MCT

>>oils (which have fewer calories in them). This hopefully slowing any

>>weight gain down and maybe him losing some of the rapid weight he has

>>put on over the past 2 weeks.

>>

>>2. Fast him for 24 hours and see how his ketones are doing etc re:

>>Freeman book.

>>

>>

>>3. Possibly look at reducing his ratio - he was doing well on a

>>lower ratio before this lot kicked off (with increased MCT oil).

>>

>>

>>Every time goes to sleep he is fitting - he is not fitting

>>when he is awake though - the panic that is gripping me is that if he

>>is catabolic and we are having all these problems with calories etc,

>>etc - then why isn't he fitting all the time (desperately NOT trying

>>to tempt fate here). I know normally only has nocturnal

>>seizures anyway, but when he is sickening for something then he will

>>have seizures at any time not just when asleep.

>>

>>I have been riding the storm tonight and have NOT given him any

>>valium. I don't know whether this is the right thing or not - last

>>night I gave him 10mg Clobazam and he still had 7 seizures and

>>couldn't walk this morning. Maybe I should give him the valium, but

>>I keep hoping that he will make that 'cross-over' in his sleep and

>>finally get some good quality rest, but if I give him the valium then

>>I am keeping him in a more vulnerable state for seizures. I am

>>sleeping downstairs with him at the moment because that way I don't

>>break my back trying to carry him downstairs in the morning.

>>

>>This was the weekend that Matt was supposed to go to respite as well

>>(this will be the second one I am cancelling) as I was going to have

>>some time with Alice (my 8 year old) - she is great by saying she

>>doesn't mind - she is a special kid in her own right - but doesn't

>>stop me feeling like the worst mummy in the world!! To cap it all

>>this week his father (spineless a***hole) is not going to see

>>anymore because he is 'too big and I can't cope with him anymore' he

>>says, obviously has nothing to do with the fact that he now has a new

>>son whom is just about 3 months old!!! Is it me or is this a bit of a

>>coincidence!!!! Sorry people, you don't need to hear all this but I

>>am just in dire need of a sound off because the world is feeling like

>>a pretty lonely place right now (wallowing in self pity at the

>>moment - will snap out of it very soon I promise!)

>>

>>Immediate plans for 8.30am this morning is to phone his local

>>consultant, track the bas***d down, dump in his lap and

>>demand a ree dx scan (I think tired, panic stricken, over protective

>>mummy that is 6ft tall and pi***d off should put the wind up him

>>enough). I am also going to phone is Consultant at GOSH too and see

>>what she has to say.

>>

>>Will keep you all posted and any suggestions you guys have will be

>>most welcome - right now I am tired, emotional and you lot will have

>>to be my sensible head. All I hope is that when I visit our local

>>hospital I will bump into the consultant that first treated

>>(he is now at our local hospital here - he's following us!) so that I

>>can get some pent up aggression and frustration out on battering the

>>living daylights out of him!! He was the one that told me that the

>>diet was crap etc, didn't work, difficult to manage etc, etc. He was

>>also the one that put on all the different drugs which caused more

>>seizures and status episodes and nights in intensive care etc, etc.

>> as 2 when I first asked for the diet - took me 6 years to get

>>him on it.

>>

>>Sorry for the whinge guys, but I don't know what to do for the best

>>right now.

>>

>>Take Care and thanks.

>>

>>Emma - Mum to who is really have a bad time.

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>> How is he doing now Emma? Careful how quickly you drop those

>>>

>>>

>>cals, you don't want to tip him back the other way, this is where the

>>dieticians are the best to advise - but I know the feeling - mine is

>>away right now too

>>

>>

>>> Pg 93 of Freeman's book is probably the best info he offers on

>>>

>>>

>>this one - 'as few as 100 cals too many per day can upset ketosis, in

>>smaller infants even 25 cals per day may be critical'.......'we will

>>at times test the system in the child with low ketones by fasting the

>>child for 24 hrs. If the ketones rise after this fast then we will

>>decrease cals.....'at an excess of 100 cals per day it takes an

>>entire month before any weight gain is seen'

>>

>>

>>> Pg 123....'children should be weighed every week...over the

>>>

>>>

>>longer term children should gain weight in proportion to their growth

>>in height. Children should be measured every 3 mths in their

>>physician's office, their height and weight plotted on a growth

>>chart, and calories should be adjusted to keep weight proportional to

>>growth'

>>

>>

>>> However....all this is well and good (the latter part more as a

>>>

>>>

>>preventative measure) if there hasn't been a state of catabolism

>>previously, and nowhere is this touched upon in the book. Perhaps it

>>was high time it WAS included, cos it is very complicated as to what

>>happens' next' after a period of malnourishment. Weight wise, growth

>>wise, and metabolism wise.

>>

>>

>>> The 90 min clockwork thing you are seeing is probably as he

>>>

>>>

>>changes with seizure susceptibilty to sleep patterns - not that it is

>>much help knowing why, I know you just want the damn things gone

>>fullstop...

>>

>>

>>> How long does this crap last you ask? Well, how long's that damn

>>>

>>>

>>piece of string basically

>>

>>

>>> As you know had a second period of being catabolic 6 mths

>>>

>>>

>>after his first introduction to that particular nasty...but the

>>initial cal increase seemed to settle him for a lot longer than you

>>have seen with , so I am guessing that 's calorie

>>increase at the time was a lot more in line with what his body needed

>>than 's recent cal hike was. BUT - that was probably due to

>>the fact we weren't guessing like you have had to - we had the

>>benefit of the ree dx test to work with. See how important I think it

>>is as a finetuning tool, especially when the situation has gone to an

>>extreme such as catabolism?

>>

>>

>>> If what you have tried this time doesn't work Emma, I think you

>>>

>>>

>>may have to get your demanding hat on - I know you already have it

>>and use it a lot - but this to me seems critical - there is a machine

>>available, you have to shout and scream and stress the importance of

>>it being used here and now to get back on track I think?

>>

>>

>>> Our dietician somehow approved 's, I don't even think our

>>>

>>>

>>neuro team knew what the machine was for.....can you go up another

>>hospital funding path to get one done? If no joy, straight to the

>>top - ie - management where the budget strings are pulled?

>>

>>

>>> You have the paper from Hopkins on the use of calometry (sp?),

>>>

>>>

>>ie - ree dx to set calories as being a step in the right direction

>>accuracy wise to arm yourself with?

>>

>>

>>> Back it up by using the argument that if you dont get this cal

>>>

>>>

>>issue sorted out, the cost to the health system overall will be a

>>helluva lot higher if you have to start back down the road of using

>>hospital admissions/resources and drugs on a regular basis - they are

>>costly, very costly - whereas preventative measures here and now (to

>>stop this cycle escalating too much further) could save them a

>>****load of money if they think about it logically and using their

>>business/financial heads. Yes?

>>

>>

>>>

>>>

>>>

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

>>> From: ketomum68

>>>

>>>

>>> His dietician is away at the moment and I was going to 'play it

>>>

>>>

>>safe'

>>

>>

>>> and reduce by 50 but I have reduced by 100 today as he was so

>>>

>>>

>>groggy.

>>

>>

>>> I have given him meds this evening (10mg clobazam) but he has

>>>

>>>

>>already

>>

>>

>>> had 1 t/c so far. I am going to wait until about 2am to do

>>> bloods/ketones etc because he has either just eaten or just had

>>>

>>>

>>a fit

>>

>>

>>> and it will mess up the readings! His urine ketones were 8

>>>

>>>

>>tonight

>>

>>

>>> which is usually good for . I just hope he has a better

>>>

>>>

>>night

>>

>>

>>> tonight than he has had.

>>>

>>> If he is still going for it tonight and not good tomorrow then

>>>

>>>

>>I am

>>

>>

>>> going to reduce again - let's face it - he is fitting at the

>>>

>>>

>>moment

>>

>>

>>> anyway and I am really concerned that he has put on nearly 2kgs

>>>

>>>

>>in

>>

>>

>>> about 3 weeks - not good.

>>>

>>> How long does this crap last - it's doing my head in and I HATE

>>>

>>>

>>the

>>

>>

>>> fact that I have had to give him clobazam tonight but he is

>>>

>>>

>>back in

>>

>>

>>> the pattern of everytime he goes to sleep he starts to fit and

>>>

>>>

>>it is

>>

>>

>>> nearly ALWAYS about 90 minutes - 2 hours after he goes to

>>>

>>>

>>sleep, I

>>

>>

>>> can practically set my watch by him.

>>>

>>> Anyway, enough of my moaning. Let me know how things are with

>>>

>>>

>>you

>>

>>

>>> and you take care.

>>>

>>> Much love,

>>> Emma. x Mum to .

>>>

>>>

>>>

>>>

>>>

>>>

>>>