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We are starting the diet!   Message List  
Reply | Forward Message #848 of 1165 |
Hi angela

Hi. I'm ToyNera. Sorry, I cant offer a suggestion for administering
the tablet, but I can tell you our experience of initiating the diet
in hospital.My son Annan just started the diet 5 weeks ago. Annan
was fasted for the first day, then when ketosis was established
spent the next day on 1/3rd of what he would normally have on the
diet, next day 2/3rds, then 3rd day full diet. His blood ketones and
glucose, temperature etc were measured every 4 hours day and night,
and ketones in his urine [using cotton balls in his nappy] were
measured every time his nappy was changed. If his glucose level
became too low, or his ketones too high, he was given apple or
orange juice. Initially 30ml juice with same of water, but we found
that this would then send his ketones too far down, so we changed it
to 15ml. That worked well. We stayed in hospital for 9days, which I
think is longer than most as we have had trouble keeping his ketones
high enough, especially over night. We also had to tube feed him for
a few days as he refused food, bottles or water, but then changed
back as quickly as he'd stopped. He had just prior started having
diahhorea, which we later realised was from too much mct oil. I
think annan recognised that and refused anything until it stopped
[diahorrea was really burning his poor little bum]. Havent had any
further feeding problems in the last 4 weeks apart from protesting
eating a few times and sometimes not drinking his quota of water.
Unfortunately tho, this was sometimes the case before the diet too.
Still trying to fing the right amount of calories to keep his
ketones up, but watching him change is amazing. We'll wait a while
before reducing his medication again. Sydney Children's Hospital
dietician [who is marvellous and comes in to work to start kids on
the diet in her own time]says that once continuous ketosis is
established, sometimes it takes 2-3 months before the full benefit
for seizure reduction is seen.Please read my message just prior to
this one as Ive said how well he is doing with his development and
awareness. I wish you all the best. ToyNera





Wed Oct 25, 2006 1:08 pm

toynera
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Message #848 of 1165 |
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My 19month old daughter Peyton will be starting the diet tomorrow Im very excited about this yet pretty nervous too. She has Myoclonic Atonic seizures as well...
angela
michaelasmom2
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Oct 23, 2006
12:07 pm

Hi. I'm ToyNera. Sorry, I cant offer a suggestion for administering the tablet, but I can tell you our experience of initiating the diet in hospital.My son...
toynera
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Oct 25, 2006
1:11 pm
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