(from Allergy Today Issue 124 Autumn 2008. Click here to subscribe.)

Connor Eccles started his life as a perfect baby, but within three weeks he was a screaming mess who couldn’t sleep for more than half an hour at a time. After spending the best part of a year going from doctors to specialists, his parents finally found some answers. Jo Eccles shares their family experience.

Mission impossible — but not quite

Our second child Connor was delivered in mid December 2006 by caesarean section. When he was born he was quite jaundiced and needed phototherapy in an incubator for three days. We came home after five days and our darling wee boy was a little angel.
We decided to go to Coromandel for our Christmas holiday as everything seemed to be going well. When Connor was three weeks old, it all turned horribly wrong. He transformed into a child who wouldn’t sleep, and instead would scream for 10 to12 hours a day. We were not sure if it was silent reflux or colic as our first child Danielle had both of these.

Because I was breast feeding, I decided that we needed to cut dairy from my diet, as Danielle had an intolerance to dairy and soy for the first 12 months or so. We’d already cut out foods that seemed to act as a trigger for reflux, such as banana, kiwi fruit, apple juice, avocado, tea, coffee and cola. Connor didn’t improve much. Instead, a red rash came up on his face and soon turned yellow and crusty. I was not sure what is was but assumed it was from breast milk spilling on his face.

Connor would only sleep for half an hour and then wake up screaming, and it would take me about 90 minutes to settle him again. By that time he was hungry and tired, so I would feed him and he would fall asleep. It became a vicious circle. The longest he would sleep was one hour and this included the nights as well.

We came back to Auckland after two weeks to see our GP, who informed us that the rash on Connor’s face was eczema. She gave us some antibiotic cream used to treat skin infections and recommended that we only wash him in aqueous cream. We also talked to my midwife, whom I had not seen since we had been away, and she told us to avoid citrus. This was like turning on a light as Connor’s worst days were after having fruit salad, which included orange, and raw fish marinated in lemon juice.

Connor’s eczema cleared up and was almost gone but the colic did not improve much. When he was six weeks old we started him on Losec, which is used to treat reflux, but this also showed little improvement.

We soon suspected that Connor was intolerant to wheat, as every time I ate bread he would become very unsettled. I tried using spelt flour for a while but this did not help.
Then off to see our first specialist. Yes, he had mild reflux and we were to continue the Losec, and he also prescribed Merbentyl for the colic. In addition to reflux and colic, Connor had what they call a fibrous ring so he could not expel the air in his bowel. The specialist slowly stretched his rectum over a couple of weeks. This finally explained why Connor’s colic was so bad and that after a feed we could get anything up to 12 burps out of him. The specialist also advised me that I should avoid nuts and eggs too. Things improved markedly — but my diet was really starting to get limited.

I was soon only eating rice bubbles, rice crackers, kumara, carrot, pumpkin and chicken. Red meat seemed to also be a colic trigger. I was starting to worry that all of this was in my head and that maybe we just had a very irritable baby.

At 10 weeks old, Connor was a lot more settled and I started to get about six hours sleep a night, which was a huge improvement on the four hours I had been getting.
At 16 weeks he started to wake every 90 minutes at night. We took him back to the specialist, who said he was hungry and to start solids but only kumara, carrot, pumpkin, rice and pear. All these foods with the exception of rice seemed to agree with him and Connor soon settled down again. He did, however, start to turn yellow with all the beta carotene!

At six months old, Connor was introduced to chicken, broccoli, beetroot and parsnip. Our specialist also recommended white fish, so we tried red cod and hoki.

Once again, Connor turned into a very unsettled baby and started waking seven or eight times a night. The eczema on his face flared up. After two weeks of this I returned to the specialist, who increased the Merbentyl dose. This had no effect and, after another week, I returned once more to the specialist who suggested a three-day trial on Neocate, an amino acid-based formula, instead of breast milk. We had a 20 per cent improvement and I rang the specialist, but he informed me we did not qualify for funding. Neocate costs $120 per tin and lasts for about three days — so we were told to try soy milk. Unfortunately we could not afford to buy the Neocate, and I was not going any where near soy, so I decided to return to breast feeding. I would express my milk and give it to him in a bottle, as this seemed to help with the amount of air he was sucking.
We also stopped giving Connor parsnip and the eczema on his face almost cleared after a few days.

After four weeks of very little sleep I decided to visit a dietitian to see if she could suggest any other foods. Anna Richards suggested a few foods we could try but to stop fish. She also recommended we keep a food diary, which we did. Anna immediately referred us to Associate Professor Rohan Ameratunga. Dr Ameratunga suggested we go on a two week trial of Neocate and that he would apply for funding for us.

After two weeks on Neocate we saw a 60 per cent improvement in Connor. He only woke three to four times at night and started to sleep for an hour in the morning and afternoon, which he had never done before. His poos, however, did turn greeny/black and he passed bowel motions six or seven times a day. We had him tested for a bug but all the tests came back clear. Our GP said they were this colour because of the speed they were travelling through the bowel.

Back to Dr Ameratunga and he suggested we stop chicken and referred us to Dr Vincent Crump for atopy food patch testing. The results were staggering. Connor had low level allergies to dairy, soy, egg, nuts, wheat, chicken, beef and potato. We were relieved that we finally had some explanation as to what was going on and that, given this result, we might also gain some credibility with our families who were unconvinced that our child was that bad.

Connor’s diet was only kumara, pumpkin and carrot as everything else just seemed to disagree. We could accurately predict a really bad night for Connor as the eczema on his face would flare up. We’d bathe him in aqueous cream and also massage some on his skin after his bath to help keep in the moisture.

Our next step was for Connor to have a gastroscopy and biopsies in mid November to see if he had reflux oesophagitis or even eosinophilic oesophagitis, which is inflammation of the oesophagus. It all showed clear, but Dr Ameratunga had warned us that this may happen once we started restricting Connor’s diet and putting him on the Neocate.

At 11 months old Connor miraculously started sleeping through the night. I, however, kept waking every hour as I was used to. Over the past three months we have started some food challenges. We have tried dairy, beef, wheat, rice and chicken. Beef is okay, chicken we are only into our second week and it seems okay — although Connor is not sleeping very well in the day time since we started this — but the rest we had to stop with three to four days of starting. Connor started waking again with colic and his eczema flared again also.

So things are improving and Connor is developing well despite his food intolerances. We are also reasonably optimistic that he will grow out of these just as his sister did at about two years of age.

Diet tip

If you are cutting a main food group out of your diet, such as milk or wheat, you need to make sure you are getting a balanced diet and enough energy. It’s important that this is done in consultation with a registered dietitian, particularly for children and breastfeeding mothers.

Milk free

If an infant is diagnosed with milk allergy, the mother can either withdraw dairy products from her diet and continue breastfeeding or use a specialised formula.

Alternative formulae include soy protein formula. Around 50 to 80 per cent of children with cow’s milk allergy can tolerate this formula. However, it is not suitable to infants under six months old or those allergic to soy.

Extensively hydrolysed formula is a cow’s milk-based formula that has been treated with enzymes to break down most of the proteins that cause the allergic symptoms. This is usually first choice in milk allergic children; however some children will still react, so an amino acid based formula may be advised.

Amino acid based formula is necessary in about 10 per cent of children with cow’s milk allergy and it can be tolerated by almost all children with soy or cow’s milk allergy.

Source: Australasian Society of Clinical Immunology and Allergy

What is eosinophilic oesophagitis?

Eosinophilic oesophagitis results in an inflamed oesophagus, the muscular tube that connects the mouth to the stomach.

Around 80 per cent of patients with this condition suffer from allergic conditions such as hay fever or asthma.

When food is involved, staples such as cow’s milk/dairy products, wheat, meats, soy and egg seem to be the most common triggers. Some researchers have found that patients benefit if these foods are removed from the diet. Others have found that symptoms appear only during springtime when patients are exposed to pollen.

Source: ASCIA