Re: Re: FIne tuning mess-Saro

[Guest guest]

Hi ,

I hope 's Dexa Scan (when he finallly gets it!) proves

to be in the normal range. Rohan's waiting for one too.

He's started complaining of backache again in the last couple of

weeks - I'm hoping it's muscular thing having been jolted on

bumpy roads while we were on holiday in Sri Lanka.

At the moment we are not thinking of doing the diet again,

but I can't really rule it out .

Just hoping the VNS comes through quick. Rohan is on

Keppra now and I think increasing the dose very slightly

two weeks ago has helped.

Saro

Hill wrote:

> So where to for you guys now? I know you are waiting to trial the VNS, but

do you intend trying a fully fledged diet again?

>

> Saro

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[Guest guest]

Hi Saro

I have been on a diff computer this last week or so, and am having trouble

finding posts in hubby's email, so sorry I missed this, think I am up to date

now Below in ****s...

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

From: Jay

>>,

Thanks so much for your posts.

I'll have to print them out and read carefully again

to take in all the points you've raised.

It scares me now, thinking about it. Rohan had good control

only for a month with Depakote on board. After that we

were weaning Dep over 10 months and then horrible

sleep sz etc. Then a calorie decrease and seemingly

better control for a couple of months. Then osteoporosis

Halt in growth and once I was shocked to see him in

underpants that were nearly falling off him. He did look like

a prisoner of war from some old war movie. It did shock

me!

***Ugh, similar images here, only had the very thin arms and legs but

with a big stomach - like those ads for World Vison on TV?? In other words -

malnutrition

He still has a protruding stomach but legs and arms look more 'normal'

now - like in jeans and a baggy t-shirt he looks about right weight wise, but

when undressed - ugh, still not a pretty sight.....I am suspecting his body

composition will not be completely normal till he is totally off the diet.

>>I can't remember whether this was before or after osteo

was diagnosed. We did increase calories then.

He might have been very near if not actually at the start

of a catabolic state.

**Sounds very much like? They tell me that 's bones would have been

next to suffer, (after losing muscle mass) but as it was, I think we caught his

in time, but the last bone density scan was nearly a year ago, and I am almost

too scared to hope that he is still in the normal range. Wait list is soooo long

here for the dexa scans, his referral went thru in Jan, and they told us then it

would be 6 mths or more before we got it. Still waiting....

>>Throughout all this we had no control of sz (still don't )

and he was on low ketones - around 1 in the AM and

max 4 in the PM. No glucose readings were taken.

We did request BHB and a glucose reading as he was

getting sz at regular times after meals. By the time they

got their equipment ready that time was well past!

Rohan's dr. is one of the pioneers of KGD here.

I do hope better testing will be done and become routine

in all the centres.

**It is def a facet of finetuning that seems to be majorly overlooked isn't

it. The standstill in height growth (along with higher glucose readings after

fasting) I think is one red flag that just isn't taken seriously enough - yes,

most keto kids slow down in height growth, but it throws out all sorts of

warning signs as to what is happening 'inside' when it stops altogether. Protein

is deliberately set at the RDA so that growth is not severely compromised, so

when it does start happening in an extreme way, surely it means 'something else'

is going on? Increasing protein to get growth going again won't work according

to our dietican unless overall cals are sufficient, otherwise that extra protein

will be being used for survival, not growth, and what's more it will convert to

glucose in the process, throwing ketosis out, so we are not advised to up

protein above the RDA unless a cal increase accompanies it.

We have recently increased protein (but only to keep up with the 1 gm per kg

calc) in conjunction with another 25 cal increase, so waiting nervously here to

see if 's height growth kicks off again. Slow progress over the past

couple of months again - but even me who has been there done that to an extreme

point with and catabolism twice already (so you'd think my radar would be

set to high alert..) was slow to pick up the signs.

So where to for you guys now? I know you are waiting to trial the VNS, but

do you intend trying a fully fledged diet again?

Saro

**