Caitlin, Erin and EGIDs


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 medication.

(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 but 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 seen. 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 and be 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 normal.

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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