Kayli's Story

Kayli was born on 12 January 1998 by elective cesarean. She is my second daughter; her older sister Tayla was almost three years old. For the record, Tayla was a happy baby from birth, breastfed on demand and easily settled, although not a fantastic sleeper. Kayli was mildly jaundiced at birth, and a little slow to fully establish feeding. However the first 5 weeks of Kayli's life I basically thought I'd hit the jackpot, she breastfed three to four hourly and slept most of the time. At 5 weeks and 4 days on a Thursday afternoon this all changed. Kayli started to scream. After about 2 hours I rang the doctors and asked if I could bring her down, I'd never heard a baby scream so persistently. I was sent home with a diagnosis of colic, and told lots of babies scream. She was still extremely unsettled so I made an appointment with the pediatrician for the following Monday.

The pediatrician immediately diagnosed Kayli with reflux. She started both Zantac and Prepulsid. The improvement was noticeable, but not long lasting. Over the following three months Kayli remained extremely unsettled and screamed most of the day. Luckily, if she was going to sleep it was mostly at night. Over this period the Zantac and Prepulsid were increased several times, each increase giving some mild temporary relief. She was also prescribed phenobarb and atropine, as a sedative. This helped while the dosage was high but each time it was reduced she deteriorated. I have since discovered the dangers of using such a drug. The pediatrician always believed me that Kayli screamed, as she managed to scream through every visit we had. The only management strategy that had any effect was that I quickly discovered I should never feed Kayli until at least 3 hours after the previous feed. Every time I gave in thinking 'she must be hungry' resulted in even greater bouts of screaming. I was also pretty sure that she was worse after I consumed significant amounts of dairy products.

At 4 months Kayli and I spent our first week in a Mother Baby Support Unit. I was nervous going in, as although Kayli screamed almost all day, she crashed and slept all night (I now know this is due to sheer exhaustion). By this stage she had been taken off the phenobarb. Kayli slept about 18 out of the first 24 hours, but then started to show her true colours. By the time we left Kayli was sleeping for significant periods during the day, and most of the night. The significant change was made by wrapping Kayli in a cot-sized sheet for sleep. (Kayli was wrapped for almost 12 months, and now at two still carries a sheet everywhere.) We were discharged on a Sunday after one week. Unfortunately Tayla was admitted to hospital the next day with a severe asthma attack, and spent 2 nights there, luckily Kayli was young enough to have her new routine maintained with the use of her pram. Tayla's asthma attack meant that we had to postpone a trip we had booked to Europe to see my brother (a trip that was booked on our knowledge of Tayla as a baby, not on our experience with Kayli!). My grandfather became critically ill at this time and we decided to cancel the trip.

On our return home things were a bit easier with Kayli. She was still extremely miserable and often screamed when awake, but she was never allowed to stay awake longer than 2 hours so there was always relief in sight. By six months I could finally face taking Kayli to Safeway. At six months we went on a family holiday to Queensland. This was the first time my husband had taken of since the birth. Luckily Kayli was quite happy most of the trip and we had a fantastic time.

By 8 months Kayli was back to old habits, screaming most of the time. I had taken Kayli to a second pediatrician for a second opinion, he had no real answers but thought her behaviour was odd. She wouldn't even make eye contact with him. However he did think she was probably past most of the reflux. I had introduced solids, which took a long time as each time I tried she seemed to scream more. I also introduced 2 bottles a day of soy formula. I had tried one bottle of cows milk formula at 8 weeks, which resulted in 7 days of constant screaming, I never tried that again. The aim of partial bottle-feeding was to allow me to work part time. Around this time Kayli had her first severe bout of mucousy pooh. This lasted about a week. The pediatrician was almost going to do something but Tayla ended up in hospital again with asthma, so the focus was temporarily shifted.

At 9 months Kayli was waking 5 times a night and extremely miserable by day. Even my friend who was baby-sitting while I worked insisted there must be something else wrong. She required constant carrying. Kayli and I were admitted to the Mother Baby Support Unit for the second time. At this time I also quit work, after only about 6 weeks back. During this stay it didn't take much effort to improve Kayli's sleeping habits. However all my pleas with both the unit staff and the pediatrician that there had to be something else were met with affirmations that it was purely behavioural. I left very frustrated and was diagnosed with postnatal depression within a week of leaving.

At 9 and a half months Kayli finally rolled. I didn't think she would ever do anything, but she had never been on the floor long enough to learn. Kayli was weaned off all medication. Over the following 3 months she was still difficult but probably no worse. She crawled at 10 and a half months and walked alone at 12 months. A very active time, and the outlook probably a little brighter.

At 12 months the decline began again. Kayli began poohing mucous all the time (sometimes 10 times a day). The pediatrician did stool tests and insisted all was ok. He suggested I stop breastfeeding in case she was lactose intolerant (another mistake!). By 13 months I didn't know what to do. Still insisting there must be a problem I went back to the second pediatrician. He performed various blood tests, including one for celiac disease. All were ok. He said if I had any more ideas to call him. Still no improvement.

At 14 months a friend insisted I speak to her friend (Joy, now a DISA counselor). My life changed. Joy insisted I see the pediatric gastroenterologist she had taken her son to. Finally I was seeing a doctor who took notice. He believed Kayli was intolerant to the protein in both milk and soy. First we tried a formula Nutramigen. The first week was heavenly, but then she returned to screaming and mucousy nappies. Kayli was then put on to Neocate. The following four months still saw its share of problems, but for myself it was much easier to deal with having the support of a doctor who worked with me at solving the problems rather than dismissing them.

After a short while we had our first night of screaming the entire night. I even took Kayli to hospital during the night, but was told nothing was wrong. Four days later Kayli was diagnosed with her first urinary tract infection. (She had had countless urine tests, as when she was constantly screaming I was forever taking her to my G.P. to make sure she wasn't sick, until now they had all been negative). A later test confirmed she did not have reflux of the urinary tract. Kayli improved and we went on another family holiday, this time to Palm Cove. The first 5 days Kayli was happier than we could imagine. But, we should never have commented, the second 5 days she screamed, including every minute of the plane trip home. I took her to a G.P. before catching the plane. He said she was fine, but suggested painstop for the trip home, unfortunately it did nothing. This was the first time my husband had continuous first hand experience of Kayli, as he generally worked extremely long hours. I think he was a little surprised. Looking back at photos of this trip we realise how skinny Kayli was looking. By 18 months she just hit 9 kg.

Kayli seemed to follow a pattern of 5 to 10 days happy, followed by 5 to 10 days screaming. Her pooh still contained mucous most of the time. The gastro specialist then tried a cocktail of three simultaneous antibiotics, as she had a history of improving on antibiotics. Once again the improvement was temporary. At 19 months a gastroscopy and colonoscopy were performed. Everything looked normal, although biopsies revealed she had colitis (inflammation of the bowel). The colitis was extra confirmation that Kayli has definite food intolerance. This is expected to heal with strict dietary measures. Kayli remains on Neocate, and has no trace of milk or soy products.

Kayli is now 2 years old. She still vomits very easily and has bouts of mucousy pooh. The symptoms are always much worse if she has a cold or virus. Kayli is now a much happier child, although still very difficult to cope with. She is still extremely temperamental, very active and has no regard for personal safety. Having said that, Kayli is also happy, loving, talks well, sleeps well and continuously eats well. No matter how miserable Kayli was, she always loved food. She has gained weight and looks very healthy. We are working with a psychologist to deal with some of Kayli's behavioural difficulties. Although now a happy child she is easily upset, often defiant and progresses quickly to screaming; no wonder with such a difficult and frustrating first 18 months of life. We are now enjoying family life with Kayli as she has become a lovable little girl with lots of personality. Tayla is finally able to enjoy Kayli as her sister. And, for some strange reason, we decided in a moment of weakness to have the third child we always were going to have. Brodie our third child is now almost four months old. And, yes, he does have reflux and possibly food intolerance. However, his sisters experience has made help much easier to obtain.