Pallister-Killian
Syndrome
JORDAN’S
STORY – BY CAROLE & IAN CLARK
(carole682@yahoo.co.uk)
BORN:- 14
JANUARY 2000
DIAGNOSED
:- MARCH
2003
PLACE:- ABERDEEN,
SCOTLAND
Jordan was born at 35 weeks and weighed 5lb 13oz.
As soon as Jordan was born every thing seemed fine, she was
taken to the special nursery because she was early. She had a bit of trouble
feeding at first so she was tube fed for the first week.
Jordan was allowed home at 2 weeks old. When she
came home she fed and slept well, just like most new borns!
Everything
was going well until at around 5 months old we started to worry
Jordan was not developing skills that she should
have been doing for her age. And still seemed very floppy for her age, every
other week we were going back and forth to the doctors,
they put it down to her being premature. I was still unsure,
so the visits to the doctors continued, I felt that if we kept going someone would take note and
listen to me!
AT
LAST
when
Jordan was 10 months old we were referred to a
specialist who agreed, that yes there was something wrong with
Jordan. From there we were referred to
a special centre for children with special needs, various tests
were carried out but they never came back with anything
Jordan has had several EEGs, and an MRI scan. In
May 2002 Jordan had her first seizure, they continued on a
daily basis having around 6-10 a day, in time these became under control with
medication, she still has seizures at times.
From here
Jordan has kept on going slowly
forward she has a moderate hearing loss and wears hearing aids in both
ears, she has ventilation tubes, and gets constant ear infections she
has eye problems and needs to wear glasses.
Jordan has been going to early intervention since she was a year old.
Jordan does not communicate and is happy to play away on her own, at
times she plays with her brother
Connon who is 7 years old, but only if she wants to,
everything is very much on Jordans terms.
CONNON AND
JORDAN (DEC 2002)
Jordan attends a special needs nursery
two days a week, and seems to enjoy it, she has made great
progress since starting in October 2001.
Jordan is still very
delayed for her age she started walking at just over 2 years, and is now
learning to climb stairs. She can finger feed very well, but will not feed
herself with a spoon. She loves chocolate and has just learned how to open the cupboard to find some!
She drinks from an anyway up
cup, but if she had her way she would use the bottle all the time.
Most of the time Jordan is happy and content and will soon let you know if she is
not.
Looking back at pictures of Jordan when she was a baby she has the Dysmorphic features, sparse
hair on scalp (it has nearly all
grown in now), she also has a high arched palate, and her muscle tone is
nowhere near as bad now as it once was.
Jordan has 63% of her cells damaged by PKS,
47,xx+i(12)(p10)[19]/46,xx[11]
2006 update
Jordan continued to go to the special needs nursery for another 2 years. She
continued to make slow progress and also regressed in certain area’s,
the
main one being her eating habits she stopped eating everyday foods and stopped
drinking juice from her sippycup.
She went back to the bottle where she would only take it if there was custard
in it. She refused to take anything else including fluids, for some unknown
reason she thrived by living on the custard and grew very big and strong.
In October
2004 we got Jordan into a new nursery for 2 days per week we knew from the
start this was the perfect place for Jordan she enjoyed being there so much
with lots of outdoor activities that Jordan just loves. She continued to make
great progress.
In May 2005
Jordan became very ill within a short space of time she was taken to hospital
where she was observed for a few days, none of the Dr’s knew what was
wrong and thought it was viral… As I was sitting by her bedside I noticed
her lips and finger nails turn
blue… I called for the nurse who put her on the SATS monitor where her
levels were way down to 75% where they should be around 99% She had Pneumonia.
She was put straight to the HDU and put on a high level of oxygen, The next day
thing got worse she was going
to be transferred to the Edinburgh ITU she was immediately put on to a Ventilator,
the Dr’s came to collect her for the journey Ian and I went home to get
some things together to make the trip also. At 8pm we got a phone call asking
us to return to the hospital, When we arrived we were told thing were getting
worse.. We made the decision not to let her travel to Edinburgh but for Jordan
to stay in Aberdeen that night we prepared ourselves for the worse. By morning
things were just the same the Dr’s decided to try again to get her to
Edinburgh, she was flown by Air Ambulance that afternoon . We followed by car
that was the longest journey of my life……. Once in ITU she was
put on a different Ventilator over the following 3 weeks things were very up and down,
but at the end of the 3 weeks Jordan came off the Ventilator and made a very
slow recovery she could not walk at all. After a couple of months she had made a full recovery.
In August
2005 Jordan began going to nursery full time in that time she has amazed us
she has started eating small amounts of food and takes various foods
liquidised in her bottle. Jordan’s sleep pattern is still crazy she can
be awake up to 6 times a night, but on a good night she will only wake the
once. In August Jordan will be
starting Class 1 at school where I
hope she will continue making good progress.
Jordan age 6
Jordan got
a new baby brother Kaiden on May 24 up until now she shown little interest in him….
Connon and
Kaiden
Feel free to Email any questions you may have
to:-
carole682@yahoo.co.uk