Son now thriving after years of allergy pain

Last updated 05:00 24/11/2014
Baby crying

RARE CONDITION: Trying to swallow food would cause Robyn's son to scream out in pain.

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My son's first anaphylactic reaction at 5 weeks old to a bottle of cows milk formula was the start of our journey with an allergy child.

Allergy test at 5 months old confirmed a dairy allergy. We thought that was easy enough to deal with, just keep dairy out of his diet and he will grow out of it, simple as that ...

I continued to breastfeed him, taking dairy out of my diet, until a month before I went back to work.

He was put on goats milk formula when he was 9 months old after failing soy formula trial. Goats milk formula wasn't fantastic for him as he reacted to that, but what other options did we have?

When he was 6 months old, we started expanding the range of solid food. He reacted to nearly everything he ate, and we were left thinking can people really be allergic to meat, vegetables and fruit? No way, it is not possible to be allergic to that ... that is food we eat to survive.

He would suffer eczema, swelling, hives, or scream in pain as he swallowed. Food took forever to get down to his stomach. His bowel motions were not good either.

When he was 10 months old, we saw a paediatrician who specialises in allergies, who immediately prescribed him hypoallergenic formula and a protein free diet - basically a vegetarian for two years.

We had a different child. His skin cleared up and his bowel motions were so much better, although still not 100 per cent, on a very limited diet. The basic explanation for his problem was that his gut lining was thinner than normal and absorbing too much - simple enough to explain to people.

When he was just over 2 years old, the funding for hypoallergenic formula changed and he didn't qualify for it anymore. We had to start giving him rice milk. We also started introducing other food into his diet.

We ended up with a child who would squirm and scream in pain, had the most awful bowel motions, the odd vomiting, again ...

He was discharged from the hospital system as allergy tests came back negative as he was "not suffering allergies". He had outgrown the anaphylactic reactions to food.

After my youngest son was born, I asked for his brother to be seen by my youngest son's paediatrician. This was a huge life saver for us.

He had food challenge tests in hospital which immediately stopped due to pain in his chest when swallowing a tiny amount of food. He was 4 years old and finally had the vocabulary to tell us his chest hurt every time he ate.

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That got the paediatrician to order a gastroscopy to have a look inside his oesophagus and stomach to see what was causing the pain.

The day after he started school, he had his first gastroscopy. The relief of having something done about his pain and food trouble was very quickly changed to disappointment/guilt when the gastroenterologist told us "everything looks good apart from redness at the bottom of his oesophagus. We will wait until the biopsy results come back two weeks later".

The guilt of putting my child through a gastroscopy under general anaesthetic, feeling like a paranoid mother being told that everything looks good ... the feeling of despair ...

A month later, we went back to the paediatrician expecting to be told it was reflux.

Our whole world changed, a huge weight lifted off our shoulders and we finally got answers. He was diagnosed with eosinophilic eosophagitis and eosinophilic duodenitis basically a food allergy of the gut.

All he had to do was eat food his gut was allergic to and that would cause the high levels of eosinophils in his upper gastrointestinal tract.

Of course, the standard allergy tests give negative result for gut allergies but we did not know that at the time. My son had had gut allergies all along.

His condition was very rare at the time of diagnosis, it was quite new to the specialists he is under.

My son takes a flixotide inhaler where he swallows the aerosol steroid medication (yes, the simple asthma preventer - swallow instead of inhaling the medication) and he is still on the hypoallergenic formula, which he was put back on after diagnosis due to funding changes.

He is also on a restricted diet.

His eosinophilic duodenitis is in remission but he is still showing high levels of eosinophils in his oesophagus. We are not sure why, but the main thing is, the levels have come down enough that he can mostly eat without being in pain each time he swallows. Some foods are hard to swallow.

My son is now thriving on a restricted diet, under a dietician to make sure his diet still meets his nutritional needs.

He still attends social events where there is food present. He knows what he can and can't eat or if he is not sure, he will ask one of us or the trusted host we have left him with.

He still attends school and scout camps but has to have a parent with him to cater for his food and help with other medical conditions.

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