Re: Re: FIne tuning mess-Dominic

[Guest guest]

Hi Dominic, below in ****s

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

From: dominicslowie

You really do sound like you could do a PhD in this, and everything I'm

reading is making

me want to somehow get your knowledge and undersatnding to the medical teams.

***Having to learn the hard way unfortunately always helps with understanding

PhD tho? Um no, I doubt it

When you talk about your 'endo' is that an endocrinology doctor?

**Yes. Sorry, it's such a long winded one I usually shorten it. Can never

remember how to spell it either

I'm also interested in these scans....dexa and ree dx....I've not come across

these despite

being in the business so to speak.

***Dexa is a Dual energy xray absorptiometry scan. So there is a small degree

of radiation exposure involved, but apparently very miminal, approx equiv to a

chest xray. Basically a test that measured bone density that has now been

expanded to include full body composition. So it measures bone density (v

important to monitor on keto, as both a baseline and then further down the track

to make sure calcium supplementation/absorption has been adequate, but no calc

supps should be taken the day before - can throw the results out), muscle mass

and body fat. Non invasive - lies on this 'table/bed, and the beams are

sort of passed over him in stages - the scanning part moves above him (about 2

feet above I suppose?) slowly down his body. Takes about 10 mins, and they have

to lie fairly still.

You get a very detailed report (his was about 3 pages long, including graphs

and age appropriate comparisons) and it basically tells you what state the body

is in. 's bone density was (pleasantly surprised to see) in the normal

range, but his fat/muscle ratio was way off base after his extended period of

catabolism.

Quite expensive from what I understand, ours was done under our public hosp

scheme, so we didn't pay for it, but I think medical insurance would have

probably covered us if we had gone private.

Ree dx is a resting energy expenditure test - again non invasive, painless and

quick - no radiation involved at all in this one. Measures the amount of Co2

(they have this big mask placed over their heads - similar to an astronaut's

helmet) expelled over a certain period ('s was over about 30 mins) and an

average of basal calorie needs are calculated based on the results. Also called

calometery (sp?). The basic resting energy need (ie - individual metabolic rate)

is different in everybody, hence the value of this one when trying to see if

cals have been set in an ok range. Percentages are then added on for age, growth

allowance, activity level, sleep periods etc and then you get an approx total at

the end of it all.

's first one showed he had been deficient in cals by abut 300 per day

for probaby a period of at least 8 mths. His cal need when in a completely

rested state came back at 1000 cals per day, so after activity, and with growth

needs etc added on, it came to about 1330. He had been stuck on 1000 cals the

whole time prior, so that is why our fun began so dramatically and in such a

serious manner back in 2002. He was basically on enough cals to survive, but

that was about it - nothing extra for any activity or growth of any sort

Ours here is a fairly basic machine, none of the bells and whistles on that I

know some of the overseas hospitals have, but it's main purpose is to assess cal

needs of bedridden or seriously ill patients (including those in comas) to make

sure they are not malnourished or overfed.

Also what is CHOP..is it a centre in NZ or USA where they are doing all this

monitoring.

****CHOP is the Children's hospital of Philadephia. Trust me - NZ doesn't

have, and isn't likely to have, any centres that specialise like that for a

looong time to come

Everything that you're writing is resonating with our experiences with Mia. We

now have

very high ketones again...perhaps too high still (Often off the scale on the

blood monitor

but better than a few days ago) despite going down to 3.5:1 3 days ago. Our

cals are 1000

a day still but we're wondering if they will need adjusting...too early to

tell with weight

alone. However her glucose this morning was 4.7 with ketones of 5.2, before

any food.

***Goodness, we have never had high blood ketones like that on waking. Yikes.

So it sounds like you may need to go go down a bit more still on the ratio, or a

bit higher still on cals? Have you recently weaned any meds that may have

resulted in her metabolism speeding up? Sorry if you have already written her

meds history, I remember keppra is in there, but not sure what else she is/was

on?

I am pretty sure the ratio drop would have shown some result by now if it was

going to, but our dietician prefers to wait 1-2 weeks after adjusting it up or

down, same with calories. Actually closer to 4 weeks with cals, as it can take

that long for significant weight gain or loss to show.

Do you ever give her anything like juice to bring the ketones down, and if so,

do you see an improvement seizure wise?

Adding a snack in as a trial can be a good way to see if it is a cal issue,

but we never went down this track, when we decide to add cals, we just ...add

That glucose still sounds too high to me for a waking result, was it before

any activity? Or after a seizure? Stress responses from seizure activity can

increase glucose levels - do you do any overnight readings? We used to test

2 hrs after his last meal (so when he was asleep, he eats just before

bed) then at midnight to make sure the levels were dropping down after his food

had metabolised, and then in the early hrs, like at 5 am ish, and then about 10

mins before his usual waking time to make sure activity didn't skew results.

If not raised from seizures etc, I think you may still be seeing some

catabolic hangover there, we were told the only way to speed the prcoess of

going back to anabolic was basicaly to give more nourishment than they 'need',

but this is not a keto friendly option of course

She had definitely been in catabolic state about 2 weeks ago and I wonder if

the situation

is still a bit in freefall? We are planning to sit tight for a bit but maybe

this isn't right?? She

does seem to be slowly improving with much fewer seizures and trying to walk

and talk

again though a little way to go.

***I think you might have to sit it out a bit longer actually - you really do

need to see what that 1000 cal level is doing to her weight. If she shows any

loss, I think a 25-50 cal increase might be a good trial.

Have you started her on carnitine, or changed fat sources that might be more

ketogenic (like flax oil for instance) as poss other reasons for ketones going

so high?

My fear for Mia, and other children who have shown a repsonse and then got in

a muddle

for whatever reason, is that the potential problems in the fine tuning stage

if understood

could, in most cases, probably be overcome.

****Yes indeed, I know for a fact that at least 3 times now would have

been taken off the diet if it had been left to our neuro team. Like so many

others here, I was just too plain stubborn to accept defeat, knowing that it was

the only option left to us to stop the seizures. All meds over 18 mths had

failed, steroids led to a hypersensitve reaction, no focal point as a surgical

option, no VNS available for children here, I was like - no, hang on - this HAS

to work!!

's initial great response gave us the boost we needed to perservere -

the tape I watched from the Charlie Foundation where Dr Freeman sits there and

answers a question used to ring in my ears - 'does the diet have a honeymoon

period, does it 'stop working' like meds can'. His answer was 'no', it is more

often than not a finetuning issue, if a child responded initially then things go

wrong. Well, words to that effect anyway...

was seizure free in the day for about 2 weeks after diet intiation -

miraculous to us, and quite unbelievable actually....then back they crept, and

we were devastated. More than devastated actually if that makes sense.

But fortunately I came upon some parental wisdom and experience on here in the

3rd week, and realised was going thru the meds/diet interaction

phenomenon. Our neuro refuted the possibility of toxicty without having

physically increased any meds, I argued it, main point to him was - you have to

understand that I feel bound to listen to suggestions from these other parents

who have lived, and are living our exact experience. Our hosp did not have a

wonderful seizure success rate with the diet at that point, so I wasn't filled

with confidence that everything he said about it was gospel...

We ended up doing a large med reduction (lamictal that time round) and got

control back. And that scenario repeated itself many times over the next couple

of yrs. Opp to a meds honeymoon where you gain control then lose it, we used to

gain control by reducing meds, and the effects, mainly toxicty induced seizures,

would keep on rising back to bite - over and over again. Starting the diet on a

3 med cocktail was perhaps the biggest mistake we made. Especially when not one

of those meds was helping the seizures anyway!! If they had been, we prob

wouldn't have been on the diet in the first place.

So yes, you are right, I shudder to think how many have been told this isn't

working, be it an unrecognised meds/diet reaction causing seizures to break

though again or persist, be it a calorie/ratio/acidity/metabolic etc issue. So

many things can and do go wrong, and it is so hard to be on top of each and

every possibility, I don't know that the day will ever come that keto centres

are fully equipped to look at each and every possibilty individually with each

child. I hope I am wrong.

Perhaps all the stats on the keto diet would

then be even more impressive...i.e many of those that are currently in the

'diet didn't work'

or 'only had a minimal response' categories were perhaps fine tuning probs

that never got

ironed out. Some children by good fortune or grace seem to hit it right with

calories and

ratio from the beginning but it's my intuition and hope that if you can just

understand

what's happening, if fine tuning goes a bit pear shaped, you'll get there.

****Yes, there are def those who have success and never look back from day

one, and reading on here over the yrs has shown me that more often that not

those cases are where there are not large drug cocktails involved, so that is

one scenario that I tend to get a bit nervous about when I see diet intiation

about to start with a drugged up to the eyeballs kiddie...

Not always the case, but it is a def common theme.

I feel we've made tons of mistakes so far and learned from them through

support from

parents in this discussion group and 's friends in the UK. We need to

find some

way of getting the professionals up to speed with the level of knowledge that

parents

have. Maybe I need to consider a career change!

**Well Dominic, you are maybe one of those in a postion who one day might be

able to do just that You have medical qualifications, (cos lets face it, even

though us parents seem to know a helluva lot more about some of this stuff than

our Drs, when all is said and done, we don't have the letters after our names to

be taken credibly all the time) you have a child on the diet, and you therefore

have the all important ingredient -ie - empathy.

Dominic's keto clinic.....nice ring???

In the meantime if there are any further tips as to what we should be doing

with Mia...even

if it is just sitting tight for a while...let us know.

***I will let you know if I can come up with anything else, but for now I

think the sitting tight option might have to be the one. Unless you feel there

is a drug problem happening, but again - if it is also a cal/ratio issue that is

working it's way right, then seizure control overall should improve from that,

and then any med induced seizures might be better controlled anyway. Lordie -

did that make sense??

Thanks

Dominic

**