[004] Daniel's story: severe colic and reflux (June 1999)

From the minute Daniel was born, he was a very unsettled baby. We went home on day three and I expected he would improve when my milk came in. I work as a midwife, so I had some idea of sleepless nights etc, but nothing had prepared me for a baby who screamed constantly when awake and slept very little. My mum said I had been a very colicky baby and my mother-in-law said my husband David had been an extremely colicky baby - so we presumed Daniel was the same.

After three doses of mastitis, I put Daniel on the bottle at five weeks of age. He was just as unsettled on formula as on breast milk. He continued to have several loose green bowel actions a day. The next day we left for the U.K. - my husband David was transferred over there for what was meant to be five weeks but turned into three months. I think ignorance is bliss, when I look back and see myself taking a screaming six week old baby half way across the world to live in a shoe box hotel room. In the U.K. Daniel continued to be very irritable and unsettled. He posited after every feed and only very occasionally vomited. The only place he was happy was in the bath, so we bathed him four times a day some days to keep him quiet. When I look back on my diary of this time, he began interrupting his feeds at about 8 weeks of age. A normal night out for tea (we had no cooking facilities in our room) would be David that would walk out on the pavement with a screaming Daniel while I ate and then we would swap. I remember feeling physically sick myself some nights, he would scream so much.

We visited a doctor for Daniel's immunisations and I told her of his constant screaming - she told me it was colic and that it would improve by three months of age. I started him on solids early in case he was hungry (rice cereal and tinned pumpkin) and changed to a formula for hungrier babies. He seemed better for a couple of days but then was just as bad.

When we arrived back in Australia I took Daniel to a local GP, the one I had seen as a child myself. Daniel was screaming and it was 11 am. This doctor gave me a lecture about colic (by this stage Daniel was four months old) and said, "how could there be anything wrong with a child that has such good weight gains?" I tried to explain that it was taking 1-2 hours to feed him a bottle, but he just gave me a lecture on midwives not making any better mothers. He threw a referral at me for a paediatrician on the way out the door (I think only to cover himself).

I tried making an appointment with the paediatrician, but. being Christmas, there were none available for another month. So we continued to battle on and tried Daniel on a soy formula which seemed to help for a while, but then he just went back to square one. He got worse with his feeds, arching his back. We would bang toys on his bottle to distract him. At this stage most nights he was sleeping though and I think that was the only way we survived. He continued to scream and whinge all day and I'm sure he was exhausted at night and that is why he slept. Despite all this he continued to gain weight and reach all his milestones. I lost weight rapidly and was lighter than before falling pregnant. We contemplated that he was just an attention-seeking baby because when we played on the floor, or took him somewhere different, with different toys, he was okay.

The feeding continued to get worse so two and a half months after seeing the GP, when Daniel was six months old I took him to a paediatrician He immediately diagnosed reflux and oesophagitis (inflammation and ulceration of the oesophagus) and started Daniel on Ranitidine (Zantac) which reduced the acid in the stomach, to stop the 'heartburn' type pain. I will never forget what a relief it was to get a diagnosis; little did I know that this was only the start.

Daniel's feeds immediately improved on the Zantac but he continued to be very irritable and whiny between feeds. Three weeks later we started him on Prepulsid (Cisapride) which increases the rate of the stomach emptying, but it didn't seem to make a great deal of difference. We tried him on Nutramigen, in case he was cow's milk intolerant. It seems to help for a couple of weeks, but then he just went back to the old irritable Daniel.

I had become suspicious of a few things in his diet. We went camping over Easter and I gave him a Heinz tomato based baby food - it came out the other end looking nearly same as it went in and Daniel was extremely unsettled all weekend. A booklet from a support group for reflux babies mentioned avoiding acidy foods for reflux babies so we presumed that was the reason it was upsetting him. Luckily, for this reason, we didn't give him Kiwi fruit, oranges or fruit juice.

At eight months of age he was still whingeing all day and throwing huge temper tantrums (head banging the dishwasher) so our paediatrician organised a barium swallow. He also started him on Mylanta four times a day. The first week on Mylanta he was wonderful and that week he had the barium swallow, which was normal, much to my disgust. The next week he was worse than ever. I stopped the Prepulsid at 12 months and started Daniel on cow's milk, which made no difference. At this time I went back to work two days a weeks and left my mum to cope with Daniel - there was no way a child care centre would have taken him. I think going back to work was the best thing. I would come home after my two days and feel ready to cope with another week of life with Daniel. My mum says she even dreaded him coming for the two days sometimes.

Around this time I tried a naturopath, masseur and chiropractor, but nothing really helped.

By fifteen months of age he was no better. A normal day was leaving him scream to get him to have his afternoon sleep and to settle at night. I would put him in his room several times a day on a bad day and sit for ten minutes and try to calm myself down. Normal daily talks such as cooking meals and washing were all done while he screamed.

I returned to his paediatrician and he referred us to a gastroenterologist at the Royal Children's Hospital in Melbourne. He told us that he doubted Daniel's behaviour was due to reflux (Daniel smiled at him and played with the toys in his room!) He advised I stop the Zantac and organised for him to have a pH study (monitors acid in the oesophagus over 24 hours) and gastroscopy (tube to look at the stomach and oesophagus). After stopping the Zantac, David actually seemed a little better and stopped his head banging.

The pH study showed 'mild' episodes of reflux. His gastroscopy showed moderate to severe inflammation and ulceration of his oesophagus and suggested that there may be an allergy involved. They suggested we see the allergy department at the Royal Children's Hospital. They put Daniel on the Neocate diet. He was only allowed Neocate formula, rice, zucchini, apple, pear and potato. The doctor at the allergy department also advised me that these children get into such bad behavioural problems that once they're fed and changed you just have to leave them scream! The diet was a disaster to say the least - to try to get an 18-month-old to drink this formula, that you gag on yourself it's so foul tasting, was impossible. Daniel screamed all week and was so bad by the end of the week I had to take time off work. He was constipated from only drinking small amounts of water.

In desperation we were referred to a surgeon about the possibility of surgical correction. He wasn't convinced - so he sent us for a gastric emptying study, which was very distressing for Daniel - they put a large dome over his fact and stomach. This showed he only refluxed once. The surgeon suggested trying Losec (Omeprazol) which stops acid production in the stomach and helps heal the oesophagus. We started Losec - after about a month we noticed a big difference in his behaviour - he was a much happier little boy and he actually sat and played with toys for short periods of time - something he had never done before.

I was suspicious of food colouring and artificial additives at this stage, as some evenings we described Daniel as 'bouncing off the walls' he was so hyperactive. For this reason we only let him drink plain milk and water and filled him full of 'healthy' fruits, vegetables and cheese!

Like everything else the effect of Losec was wearing off. Daniel was starting to complain of his 'tummy burning' and pointing to his oesophagus. He required constant amusement and was general a very unhappy little boy. I was finding him nearly impossible to live with and constantly comparing myself to the other mums in playgroup and wondering why they all got so much enjoyment out of their children.

When Daniel was around two and a half years old I happened to got to a seminar through work on food intolerance and allergy run the team at the Royal Prince Alfred Hospital in Sydney. I couldn't believe what I was hearing at the lecture - it was Daniel all over! I immediately sent away for the elimination diet books and got a copy of Friendly Food.

I started off by leaving him on dairy and wheat products. After 1-2 weeks we noticed a difference in his hyperactivity on the diet but he was still having many days of irritability and complaining of his tummy burning. His loose bowel actions were persisting. We stopped dairy products and put him on soy and we starting giving his Losec in pear jam instead of yoghurt. He had watery diarrhoea for two weeks after stopping dairy products as a withdrawal effect. Unfortunately what we didn't know was the Losec is not absorbed properly unless given in something acidic like yoghurt. After one month of giving the Losec in pear jam, Daniel's stomach pain was severe.

After being unwell for three days with a high temperature and complaining of shoulder tip pain, Daniel was finally diagnosed at the Royal Children's Hospital with pneumonia from aspirating on his vomit. (I had seen two other doctors who told me children don't know where their pain is and that he had a viral infection.) The pneumonia was in the back of his lung and was pressing on his diaphragm, which was giving him shoulder tip pain. I have never seen Daniel so sick - we thought he was going to die.

Again in desperation we returned to his gastroenterologist who advise another pH study and returning to the surgeon for fundoplication, which kinks the oesophagus to stop food refluxing back from the stomach. He felt he might have a physical problems as well as an intolerance, which caused hyperactivity. So when he was three, Daniel had fundoplication. We stopped the Losec the night before surgery. The surgery was major - four days in hospital and two days on a morphine infusion. As soon as the morphine stopped Danial started complaining of his stomach burning but now he pointed to his stomach rather than his oesophagus - the surgery had only moved the pain. We recommenced his Losec on leaving hospital. Daniel's weight had dropped from above to below average, as we struggled to maintain his nutrition on vitamised elimination diet. I hit rock bottom. I was waking at night in a sweat over what I had put him through. I rang the Royal Prince Alfred Hospital Allergy Clinic in Sydney, beside myself, and they suggested that we bring Daniel up to Sydney. I only wish we had done it prior to the surgery.

At the clinic, his behaviour chart revealed that Daniel was very high for hyperactivity and learning problems and we were told we were dealing with severe food intolerance and ADD. We were advised to try Daniel off pears as he is very salicylate sensitive.

Daniel is now nearly four and in the last month he has been consistently much better. He only tolerates rice, potato, cabbage, beans, chicken, lamb, Nuttelex and restricted amounts of sugar. He is still on Losec which we have increased in the last month to combat his stomach pain. We have found he is no longer reacting as badly to perfumes since stopping pears and maple syrup. Since stopping rice bubbles his aggressive behaviour have ceased. He will actually sit and play with toys now, although his concentration is poor at times. We have tried him on Ritalin but if he's having a bad day food wise, Ritalin only makes him worse.

The last four years all seem to blur into one big nightmare but I realise I was becoming very bitter about the whole thing. I have resolved to look ahead only. Daniel is really a beautiful little boy underneath all the problems he has had. I try to make the most of the good days and not dwell on the bad days.

It is in the hope of preventing someone else living our nightmare that I do the telephone counselling for D.I.S.A (Distressed Infants Support Association of Vic) and have agreed to be the Melbourne contact for food intolerance in Sue Dengate's book Fed Up. - Jenny