 Type
1 diabetes
Fiona Clarkson describes life with her diabetic daughter Lauren.
We thought it was the terrible twos …
We first noticed something was wrong when, after a string of colds and
a nasty chest infection, Lauren went from being a happy, energetic child
to being sullen, argumentative and difficult more or less overnight. We
assumed it was the onset of the 'terrible twos' so didn't pay too much
attention to it. We certainly didn't link it to her recent illnesses.
As the weeks went on, she became even more difficult. She would cry if
you even looked at her - she wouldn't eat a thing but constantly demanded
drinks of milk and water. She was going through a four-pint bottle of
milk a day and then drinking water on top of that. We tried to stop her
from drinking so much as we thought it was due to her filling up on milk
that she wouldn't eat anything but she just threw tantrums and screamed
and cried until she got the drink she wanted. It was absolutely exhausting,
especially as I was in the early stages of pregnancy so wasn't feeling
too great myself. My husband was a full-time dad at the time so he was
verging on a nervous breakdown from the constant crying and demanding.
At one point we had to send Lauren to her grandma's for a week because
we couldn't cope anymore. It was awful - I really thought my family was
falling apart.
Lauren then started wetting the bed every night. She wears a nappy but
each morning would wake up saturated in urine from the neck down. When
it got to the point that she hadn't eaten a thing for over a week, we
decided enough was enough.
There was irreversible damage
We took Lauren to the doctor, thinking he would say she just hadn't fully
shaken off her chest infection. He briefly mentioned diabetes but said
it was more or less unheard of in children of Lauren's age. He took some
blood samples and said we'd get the results in ten days or so - but the
next day he called to say they'd had the results back and Lauren had type
1 diabetes. He advised us not to rush but she needed to go to hospital
as soon as was convenient. We told him that overnight she had started
vomiting a lot and he advised us to call an ambulance and get to the hospital
as soon as possible. Vomiting was a sign that she was suffering from ketoacidosis
- a condition that could put her into a coma or even kill her.
When we got to hospital she was put on a insulin drip and a fluid drip.
She was dehydrated even though she was drinking so much because of the
heavy urinating. I went home for the night and my husband stayed with
her. When I returned in the morning her little face and body were all
swollen due to the fluids. It was very upsetting to see and we both felt
so guilty for not realising there was something wrong earlier.
The next three days were a whirlwind, with visits from the consultant
to explain what type 1 diabetes is. Unfortunately, the chest infection
she had had infected her pancreas and stopped it from producing insulin.
The damage was irreversible so she would have to inject with insulin twice
a day for the rest of her life. She would also need to check her blood
sugar levels by pricking her finger with a small needle four-to-six times
a day in the early years. Her urine would need to be tested for signs
of ketones (poisons produced when the body isn't burning sugar properly)
whenever her blood sugars went too high. What we had
to do
Obviously Lauren is too young to do all this herself so we had to be
trained to deal with it. It was a massive shock and a lot to take in.
We were visited by a diabetes specialist nurse who showed us how to use
the finger-pricking machine and how to inject insulin with a syringe -
by day two of being in hospital we were injecting her ourselves with a
nurse supervising. It was very scary thinking we would have to do it by
ourselves at home.
We saw a dietician who went through all the foods Lauren would eat and
made a list of what now had to be banned - no chocolate, nothing sugary
and no sweets. Luckily we had brought her up to eat healthily so it wasn't
a massive adjustment. The worst thing was that she was such a fussy eater
but we were told she must eat to keep her blood sugars stable. How do
you explain that to a two-year-old?!
After three days in hospital we brought her home. It was good to get
back to normal but we were really scared because it meant we were "on
our own" - we had phone numbers to call for advice but we still felt unsure.
What the treatment involves
Every day we had to get up early to do a finger-prick blood test and
give her an insulin injection. We used a syringe instead of a pen injector
because the consultant wanted us to be comfortable using a syringe in
case the pen failed. Lauren coped well with the injections but she wasn't
keen on the syringe; the needle is longer so more painful for her. We
then had to wait 30 minutes before getting her to eat some breakfast which
gives the insulin something to work on. If she doesn't eat she risks having
a "hypo" - a hypoglaecemic episode which means her blood sugars fall too
low. If not treated with some sugar and a snack, she could have a seizure
or fall into a coma because she has too much insulin in her body but not
enough food for it to act on. The opposite end of the spectrum is a "hyper"
a hyperglaecemic episode which means her blood sugar is too high. If she
has ketones present in her urine, it means her body is burning its own
muscle tissue instead of the readily available sugar in her blood because
it doesn't have enough insulin. Ketones are the poisons released when
this happens. It's very dangerous and can kill if left untreated.
Our days became a round of blood tests, injections and chasing Lauren
around, trying to get her to eat, which was hard and stressful. It was
hard not to blame her when she went hypo because she wouldn't eat but
obviously she couldn't understand. We started to take it out on each other
and rowed constantly in the early weeks.
We found that milk helped stabilise her bloods so if she wouldn't eat
we gave her milk. Over time, we realised the more we tried to push food
onto her the more she refused it so, after a chat with the dietician,
we decided that hypo or no hypo we would stop harassing Lauren and let
her tell us when she was hungry. It was hard at first because we knew
the consequences of her not eating but she did become more receptive once
the pressure was off.
To relieve the pressure even more we went back to the consultant and
he changed Lauren's evening insulin to a different type that could be
given after she ate. She never eats her tea so we were treating her hypos
every night which was inconvenient and upsetting for us. This new insulin
was fabulous. We waited to see if she would eat and, if she didn't, we
gave her a very low dose of insulin. If she did we could give her more
to work on the food she had taken in. She hasn't had an evening hypo since.
How Lauren has adapted
Once these changes were made we could relax a little. Over time we have
all settled into our routine nicely. Lauren is not at all phased by her
condition - she has even learned how to do her own finger-prick tests!
She can't read the results yet but I think it's amazing as she's not even
three years old! The syringes have been replaced by two pens, one for
days and one for nights. Lauren likes to put the needles on the end of
the pen and screw them on then shake the pen to mix the insulin up. If
you leave her to play alone with her dolls and just watch her from a distance
you will see her giving imaginary blood tests and injections to her dolls
and giving them imaginary glucose tablets to treat their "hypos". It's
very sweet to watch. She's over the moon with her new necklace that reads:
'I have diabetes - please check my blood sugar before treating me.' !
All our lives have changed
My husband, Simon, went back to work again so we had to find a childminder.
They were all very open-minded when I explained about Lauren's diabetes
and assured me that they could cope but, within a month, we were looking
for someone new because they simply didn't listen to instructions. We
have finally found a reliable woman. She contacted Diabetes UK the minute
she started looking after Lauren and got as many leaflets and information
as she could - she used to be a nurse so injections aren't a problem and
she asks lots of questions which is great. I just hope she doesn't retire
anytime soon!
I'm due to give birth in a week and a half. The new baby will have a
ten per cent increased risk of diabetes because Lauren has it. Rather
than worrying about the extra work that would involve, we think it would
be so strange to have a child who doesn't need the level of care that
Lauren does! It has become so second-nature now that we can't imagine
looking after a child without diabetes! But, fingers crossed, the new
baby will be OK.
It's so important to stick together
The only advice I can offer to other parents of children with special
needs is to try to stick together. It's such a scary and stressful time
that it's easy to fall apart or blame yourselves but you need to be strong
for your child. It's easy to forget that we will only have to cope with
all this for another seven or eight years, by which time Lauren will then
take over her treatments. In the end, she is the one ultimately affected
by this so we need to be her support when things get hard for her.
Where to next?
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