What is the most difficult symptom to manage?

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.