Re: Update.

[Guest guest]

Ugh - why no ree dx? Hard to comprehend that little ole' New Zealand has

these machines available and a UK hospital doesn't?

But that weight loss in a (supposedly) growing boy is a def red flag, so I

guess that will have to do for now as far as clues go. Our endo said that

even a weight standstill is equivalent to weight loss in a child, so one

step past that and actually seeing a def weight loss on the scales with

may mean even more so that there is (and poss has been for a while)

a def problem there.

How does that 1.5 cm height growth in the past year compare to non keto

kids on a growth chart? Like is his age one where he would normally have

shot up at this stage? Do you have any idea at what rate the 1.5 cm growth

was over? Like did he grow that much say Jan-Apr then stop altogether, or

has he gradually very slowly been inching up all the time?

400 cals does sound like a very big increase, but I guess time will soon

tell....We had to do 300 cals all at once too after seeing 's ree dx

results though, and he was younger and smaller than , so hoping again

that it is a step in the right direction for you guys as well.

PS - No of course I don't mind you forwarding on any emails, er, as long

as you deleted any empathatic swearing that might have slipped in

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

> Can't get a ree dx test - they don't do them for this kind of thing

> over here, but I have managed to get to see a local consultant this

> afternoon and he turned out to be lovely (thanks for the

> recommendation Val - you were right - he may not have a lot of keto

> experience which he freely admits to - but he listens and basically

> asked what I wanted him to do! now has a local consultant

> which is a first for about 3 years and I feel that I have a bit more

> support which is good).

>

> Height and weight were done again - has grown 1.5cms in the

> past year (or even less as is not great at standing up

> straight and fidgets!) His weight was done on the 8th July and he was

> 33.65kgs, today he was 32.4kgs. The extra calories do seem to be

> needed. Bloods were also taken today and everything is being

> checked, his blood gases results I have already and all are fine, the

> rest of the results I will get tomorrow as the consultant is going to

> phone me to let me know (unbelievable I know, but he really is a gem).

>

> I have spoken to his dietician again today and we are going to keep

> his calories at 400 extra for the time being and see how he goes. It

> may be that we will need to reduce them a little in time but we will

> have to see how it goes.

>

> She was very interested in what you had to say and I hope you

> don't mind but I forwarded to her the messages you have sent me and

> she is going to discuss them with the consultant next week - she is

> very good and is open to gaining all the knowledge she can as well.

>

> You have been an absolute star and I cannot thank you enough.

> I know that I am not out of the woods yet with but I think

> you have put us on the right road.

>

> Thank you everyone for your support - you have really helped me get

> through the past few days - I HOPE is recovering now - but

> time will tell on that one.

>

> Love and Prayers to you all.

>

> Emma. Mum to - who is hopefully getting better!