Kitty was always quite an enthusiastic girl,
she loved being outdoors,
she loved getting dirty,
she loved joining in with lots of
different adventures, really.
So in the beginning when she started school,
in reception they get taught
how to wash their hands properly.
And so immediately she came back home
and was like "Mummy, Daddy - you need to
wash your hands like this."
I was like "ohh obviously they've
been teaching them that."
But then that progressed to...
"No you've not done it properly Mummy."
"No you need to wash your hands."
and she would be more watching
where we put our hands
a sort of classic, almost OCD sign
of hand washing...
She stopped wanting to wear dresses,
or leggings that were really tight on her legs.
She would always want to wear really baggy
..baggy leggings.
She then started restricting her diet,
to the point that she didn't want to eat meat.
Suddenly when you add them all together
and say them all now it sounds,
you know, concerning.
She would also remove herself from us,
sort of emotionally, and affectionately
as well so she wouldn't want us to kiss
or hug her, and at sort of 9 years old
um, you know, that's really hard for
her to push away like that.
I remember when she was in year 2,
we had a conversation with the teacher
who said she didn't like other people sitting
in her chair, in the classroom
although they didn't have specific chairs
sort of theirs, but Kitty obviously knew
that, that chair was hers and she didn't
like someone else sitting in it.
So that was quite an indication actually that
she was liking to be in control of things,
'cause maybe she was feeling 'out of control' inside,
that she couldn't control how she was feeling
and didn't know how to make sense
of these feelings.
So the bed-wetting started,
so that continued for sort of 18 months.
A more convincing aspect of her symptoms
that we felt that "Is it something medical?"
you know because that, to regress back to
bed-wetting so frequently
is a clear indication that something isn't right
within the body or mind.
And I think it got to the point where I was
at work and I was talking to another parent,
"Yeah I'm going through all these things
at the moment and I just don't know
what it is..." and she then said
"Oh it sounds familiar, a friend
of mine, had her daughter went through
something very similar,
let me try and connect you."
and she also put me in touch with
a Facebook group, a Facebook Forum.
And I could see that there were other children,
and other families going through what
we were going through,
and it was a relief in some way,
to know that, we all know what our
children are like, deep down you know when
something's wrong.
Kitty has a great mask that she puts on,
and I would know immediately when I pick her
up from school, even now - when she's
older - I can see it in her face
if she's had a bad day.
When I mentioned it to a teacher she said,
"I've noticed that,
I've noticed that she does that." and that was,
that was just pure relief really,
from my perspective.
I'd looked on the Facebook forums,
and looked at various chats that people
were having about pediatricians who
specialized in PANS and PANDAS,
um Nationwide and there are a few.
But like with all of these things,
it was good to get my GP involved too.
I had written to her saying,
you know "Can we have an appointment?" so,
we had the appointment and I explained about
PANS and PANDAS, and the website comes up
with really good information for healthcare
professionals as well.
We then put a plan in progress to
have a referral from the NHS,
and unfortunately with a lot of things,
sometimes the symptoms aren't always there
and are enough of an indicator to have the
referral accepted, which it wasn't.
But I wasn't prepared to stop at that point.
PANS and PANDAS are the same
but some symptoms can display
themselves quickly,
with regard to any kind of Strep infection
that the child might have,
and with Kitty, it was more of a long process,
before we got to that PANS diagnosis.
We had our medication prescribed,
and it was more of a case of trying to
speak to Kitty, to try and say,
"This is going to help you, it's just an
antibiotic that will just help you."
Trust your instincts as a parent,
you know your child more than anything,
what they're like, what they were like growing up.
You know if there's something different
about them, so always trust your instincts.
And talk to other parents as well.
I'd say that the PANS, PANDAS forum
the website is really, really useful,
so if you have got any kind of inclination that
your child might be suffering and showing
signs and symptoms of it then,
definitely look at the website, and also
to see your GP, health care professional
to just talk over with them anything
that is concerning you.