were starting the diet at home. i am not to familar with it. we
will find out more about it tomorrow when we meet with the dietician
again. she said she was just going to switch his formula over. he
is severely multiply impared. he is in a wheel chair and can not
talk or walk or anything. so he is fully dependent on me. he is g
tube fed completly cause if he eats by mouth he will asperate. umm he
cant cough up his own secretians so we use a suction machine. he is
on a apnea monitor at night because most kids with his disorder pass
when their sleeping.
he has menkes disease which is a life threatening illness most
children pass within the first couple years of life. but hes 5 1/2
and doing well. just every little thing is a big change for him.
and last time when he went into keytoses we almost lost him he got
sooo sick. he ended up in ICU thats why i stopped the diet to begin
with. but his seizures are just uncontrollable and i feel so bad for
him. we have tried everything phenobarb, lamictal, acth shots,
dilantin, klonipin, keppra, vigabitrin, you name it weve tried it he
to has been through it where he has like 200 or more a day. right
now he probably has about 20 to 40 but they are harder and usually he
smiles after them and giggles. but lately hes been screaming.
so hpefully this will still work if hes not in keytoses. cause i
dont know if i can go through that again it was to hard on him. and
the dietician said it would be ok to start without starving him
first. so well see ill let ya know how he does. are any other kids
tube fed this diet? they were going to start the adkins diet but
they said hes tube fed so they cant they have to do the ketogenic.
so im hoping it works out and we have good luck with this diet and
its the answer to help him feel better
ill let you know how he does and how things go tomorrow with the
dietician any other information will be helpful :) thanks
jessica