-
What is the most difficult symptom
to manage?
-
I would say seizures
-
being the first,
-
and the saliva.
-
Secretions.
-
Ruby had problems with airway
-
from when she was born really.
-
Looking back now there was
-
a lot of hypotonia, low
muscle tone in her throat.
-
That was a personal thing to
Ruby, I think.
-
She had airway collapses.
-
Keeping that free and clear,
through positioning
-
when she was sick and
required oxygen
-
that was the hardest thing
to manage.
-
The first very difficult symptom
to manage
-
were Amelie's seizures.
-
She started having seizures soon
-
after she was PEG fed.
-
They weren't that bad but obviously
-
it is very difficult to see your child
-
having a seizure, especially
for the first time.
-
We realised soon enough that
-
because Amelie was a little unwell that
-
when she didn't feed she was not
having seizures.
-
As we were observing this, we were
-
told to try the ketogenic diet on her
-
which has worked quite well.
-
Actually, Amelie who is now
-
had her first seizure
three and a half years ago
-
has got quite a good control of
her seizures.
-
This helps her a lot,
in general.
-
When they weren't under control
-
they are quite difficult to
watch and to manage
-
because all you can do is
hold her and comfort her.
-
But, you can't stop them.
-
It's a very difficult symptom
to deal with when
-
it first starts.
-
I think with Amelie's case
-
you can use lots of
different medication
-
and we thought we'd try
the ketogenic diet
-
purely because she is
PEG fed so it is quite
-
easy to to mix up the powders
-
and give her the right amount
in each feed.
-
We saw a success using it.
-
Some children use it but
they don't see any difference
-
in their seizure activity.
-
In Amelie's case it went from
-
every hour and a half or
two hours
-
to maybe one a day.
-
She doesn't have any of those
big holding breath seizures
-
anymore which were the
biggest problem.
-
We put that down purely
due to the diet.
-
Secretions
-
are the most difficult
-
and the one which can change
-
the most, minute by minute,
hour by hour.
-
You have to tweak little things,
sometimes several times a day.
-
They are never really undercontrol
-
so they are always something
there you have to deal with.
-
He is sick a lot.
-
His breathing, and muscus.