Continued from Part 1 ...
‘Safe’ and ‘unsafe’ foods
Current ‘safe’ foods are organic - swede, potatoes, sweet
potatoes and spinach, normal bananas, organic corn cakes, Organix
apple and peach puree baby food, Hipp organic apple juice with mineral
water then diluted even more, apple crisps, lamb and mackerel. Caitlin’s
worst reactions are to rice, dairy, chicken and oral medicines, and
she has recently had skin reactions to glitter, glue, green crepe
paper, crayons and colouring pencils. She had a full-blown reaction
to lighter fluid from a neighbour’s barbeque, leaving
her requiring medical attention for skin burns and struggling to
breathe. It was the first time in over a year we reached for the Epipens.
Caitlin’s state now...
Unfortunately Caitlin is currently in the middle of the worst flare-up
she has had since Christmas and her diet is restricted to corn, apple,
potato and Neocate for about eight weeks, after which we will reintroduce
foods one at a time every two weeks. We are waiting to go back to
see her gastro doctor.
Caitlin has reacted to so many things that it would take me an age to write them
all down. We have a constant struggle with her behaviour and her speech is delayed.
Her sleep patterns are still all over the place but getting better. But most
of the time, most of her symptoms are under control with a restricted diet and
(Our other daughter Emma doesn’t have the same problems. We have to
avoid one or two things [antibiotics and melon] as she has reacted in the past
other than that she is fine.
I have lived with allergies all my life but things were not well diagnosed back
then so I was just branded a sickly child!)
Erin’s problems began a few days after birth. She developed
very bad colic, screamed for hours at night and had a bloated tummy.
Our health visitor said she was the most colicky baby she had ever
After about eight weeks Erin weaned herself off the breast and onto formula milk.
This seemed to solve the problem with the wind and everything was fine for most
of the time. We began introducing solids at the normal age, but looking back,
we had very brief periods where Erin would become aggravated, scream
inconsolable for 10-15 minutes. This happened with increasing
regularity but we just put it down to temper tantrums or teething.
Sleepless and screaming
On 26 December 2002, just before her first birthday, Erin screamed for most of
the night. She was inconsolable and it was early morning before she finally managed
to sleep. This became our way of life, every night, without fail. Sometimes she
would fall asleep at 7pm, wake at 10pm and be awake until 7am. Other times
she would not sleep until 6-7am and sometimes she couldn’t sleep at all.
Erin had tempers like most children, but she also had screaming fits that lasted
10-15 minutes and would pass after she had passed wind. She would lash out and
be very aggressive.
Shortly after her first bad night in December she had two 24-hour sickness bouts
seven days apart. I put it down to a nasty bug but the weeks turned to months
and I spoke to my health visitor. We tried the controlled crying method in case
Erin was just having sleeping/behaviour problems. We tried taking her out of
the cot and
putting her into a bed and we tried maintenance doses of paracetamol but nothing
worked. My health visitor agreed that there had to be something wrong.
The weary road to diagnosis
Then began our long weary road to diagnosis. To start with, our GP said Erin
was teething, and then it was her behaviour. Urine and stool samples came back
After jumping up and down a lot we were finally given a referral to a consultant,
over a year after her problems started.
I had to keep shouting louder and louder to get tests done. Erin was sleeping
for only a couple of hours a day now. Life was unbearable, she had no energy
and seemed constantly in pain.
Then she began to suffer abnormal bowel movements once a day. After six months of being told that daily diarrhoea was
normal I became desperate.
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