Continued from Part 3 ...

Dealing with ESIDs
At first Erin was put on a restricted diet - no wheat, gluten, soya, milk or eggs. It wasn’t easy as three-year-olds are fussy eaters but we muddled through and came up with many ingenious recipes.

But still her symptoms didn’t subside and the decision was taken to put her on Neocate only, to give her colon time to rest and recover. She didn’t like the taste and we realised there was no way we could get her to consume the required amounts orally.

Artificial nutrition
In September 2005 she was fitted with an nasogastric tube in London. It was quick and easy to do but horrible. She had this long tube passed up her nose and into her stomach. The tube was taped to her cheek and taped to her T-shirt. Six times a day we had to test the tube to make sure it was still in her stomach by drawing up fluid through the tube and testing it on litmus paper and then giving her a bolus feed.

The tube was awful but the results were amazing. Within a couple of days Erin was sleeping 14 hours a night, she was happy, running everywhere and wearing me out, just like a three year old should. We began food trials after eight weeks but within 7-10 days of trying each food her symptoms would return and we would go back to Neocate only.

We kept the NG tube until April 2006 without too many problems; once she pulled it out in her sleep. Another time the tube went past her stomach and she passed out whilst she was having her feed.

NGT to PEG
Erin’s confidence began to suffer because she knew people were looking at her. She kept saying people didn’t like her and she was ugly because of the tube. She was also reacting to the tape used to attach the tube to her face and had to be sedated when they changed the tube every six weeks. So the decision was taken to insert a PEG into her stomach. It was great - no one could see it so she was happy and it made feeding a lot easier as the tube didn’t have to be tested.

Food trials
We continued at a fast pace with the food trials but it seemed to me that Erin was either slowly getting ill with a food trial or slowly recovering from one and there was no time for good times in between. After a weepy conversation with our community paediatric nurse it was agreed that the whole process be slowed down.

Life continued really well, her symptoms were under control and in between food trials we all lived a relatively normal life. Sadly in June this year Erin’s symptoms began to return and three months on she is suffering pain again but admittedly not as bad as before.

Where next?
We are considering what to do next, and it may be that we are left with no option but to try steroids. But for now, we keep going and she keeps smiling. At least we are not alone now - we have a diagnosis, a network of support and the knowledge of what is actually wrong. Erin finds it difficult at times watching other children eat, and we find it difficult to eat around her as she is constantly smelling the food we eat and asking when she will be able to try it. With a wisdom beyond her years she never tries to take food and deals with everything this illness throws at her with very little complaint.

TEDs
Nicky and Kelly run TEDs for children and adults suffering from eosinophilic conditions. There is an online support group, information, coupons and samples for members.TEDs will raise funds to provide practical help, such as financing private health consultations, overnight stays (so both parents can be nearby when a child is in hospital), help with travel costs and respite care. With enough funding, a team of specialists from a children’s hospital in the USA has agreed to come to Britain to raise awareness of the disease and share their knowledge.

Kelly says: ‘We have been overwhelmed with support from manufacturers giving free information and samples, and offers of financial help across the board. With the help of publications like Foods Matter, we aim to raise awareness across the UK. It will take time, money and hard work, but we are two very determined ladies and above all else parents who do not want to see others going through what we’ve been through.’

Originally published in 2006. Updated May 2013. Since this article was published, we have learned TEDs is no longer operating. An alternative charity, FABED, is worth contacting for advice.

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