Charlie's Story

When I think about our family’s journey into diagnosing Charlie’s cows milk protein allergy I cannot believe how long it actually took and how unhelpful the first line medical professionals actually were.

It makes me angry to think that my son suffered unnecessarily for so long and it breaks my heart when I think about the repercussions that the whole process has had on my husband, Charlie’s older sister, Summer and I.

When Charlie was born, like his sister, breastfeeding was established quickly and with minimal complications. The only drawback for me was that he wanted to feed every hour and a half and sometimes he would stay on the breast for what seemed like ages. However, whenever he was weighed for the first few weeks he gained a good amount of weight and was following the 50^th centile line just like his sister before him. I felt really proud that my breast milk was providing the nourishment my little baby needed and that he was thriving and naively assumed Charlie would follow the 50^th centile as perfectly as his sister did (whom I neurotically weighed every week like clockwork). I started referring to Charlie as an easy baby as he was so even tempered and was sleeping from 8pm to 1am from around 4 weeks.

However, shorty after Charlie’s six-week check things seemed to deteriorate. Charlie began to develop a runny nose and a really harsh sounding cough and displayed colicky symptoms at around 5 am every morning. As he was so young I decided to take him to see the GP. The doctor listened to his chest and told me it was clear and reassured me that everything was ok and that there was no sign of infection. I remember leaving the surgery feeling slightly patronised and made to feel I was overreacting. It became clear to me after three days that things were not right when the symptoms persisted and he coughed so violently that he vomited and so my husband took him to see the doctor again as I felt too embarrassed once the receptionist told me I would be seeing the same GP I did before.

Again he was diagnosed as being free from infection and so we just put it down to him being unlucky and probably catching everything his sister brought back from nursery, After three weeks of persistent coughing and a blocked/snotty nose his chest started to sound extremely rattley and so we made another appointment. There were, again, no signs of infection, but the doctor did say that there could be an element of hay fever and that I should keep an eye on his weight since he had dropped from the 50^th centile to the 25^th. However, his symptoms did not improve and got progressively worse and at one point during a weekend shopping trip when he sneezed there was blood in his mucus so I took him to the emergency medical service since the local GP surgery was closed.

Charlie was prescribed antibiotics as he had a very red throat and this time the doctor said he had an infection and a high temperature. The antibiotics really helped but gave Charlie diarrhoea and his 5 am colic seemed to get worse. I remember feeling helpless as I held him while he drew his knees to his chest and cried out in pain. The only positive being that his cough did seem to be improving.  This did not last long though as a few days after he finished his course of antibiotics he began to cough again and so we were back at our GP surgery.

This time the GP said he had crackles and wheezes on his chest and so prescribed erythromycin as I told him that the amoxicillin he was given before gave him diarrhoea and severe colic. The erythromycin gave him so much tummy ache that we stopped the course early. Following on from these episodes of cold, his colic got worse and, like clock work, he would draw his legs up at around 5 am every morning and scream in pain. His sleep had also gotten progressively worse and I had resorted to breastfeeding him all night, as it seemed to be the only thing that would soothe him. I remember feeling like I was creating a vicious circle as this probably added to his gassiness. On top of this Charlie’s daytime feeding had started to get worse as well. He would seem really desperate to feed but when he latched on he would pull off and cry. I started to become extremely frustrated, coupled with the sleep deprivation things got really bad for our family.

Summer must have sensed something was wrong because although she was initially excited about having a new baby brother she started to lash out and become extremely clingy. She began to throw tantrums for the first time and since I was so tired I am ashamed to say that far too often I lost my cool and shouted at my little girl. Everyone was unhappy. I started to resent my husband for not being able to feed our son and lighten the load for me and we would argue constantly. Looking back, I know that my behaviour was symptomatic of the fact that nobody could tell me why my son constantly had a cold and was slowly crossing two centiles and that although I was to see the GP six more times over the next three months no one was actually listening to me. My gut instincts were telling me that something was not right with Charlie, that yes his sister and him were not the same child, but by 9 months Charlie was a whole kilogram lighter than his sister was at the same age.

On reflection Charlie’s feeding patterns both with exclusive breastfeeding and weaning onto solids were what eventually led me to suspect that Charlie had a cows milk protein allergy. Once breastfeeding was fully established he would only stay on the breast for about ten minutes and very rarely would he take both breasts. I thought that he may just be a very efficient feeder and was told that was probably the case by the health visitor.  I did notice though that he was slowly shifting centiles and that he was not gaining much weight, which I raised with the GP and the nursery nurses and health visitors at the clinic, but they all just advised me to just have Charlie’s weighed checked every two weeks. It got to the point that 3 months had passed and I had been going to have him weighed every two weeks with the same concerns. The health visitor suggested that I start to wean Charlie onto solids and to establish three meals a day as quickly as possible.

Introducing solids was its own challenge as Charlie never really seemed interested in food and hated being in his highchair. He would cry and cry until I gave up and would finally hold him. I discussed this with the health visitor on a number of occasions and they advised that this was probably a result of the fact that I often breastfed Charlie through the night. After far too many sleepless nights, and Charlie’s refusal to take solid foods, my husband and I decided to attempt night weaning. Although this did increase his solid intake in the daytime, this too was a painful process, as Charlie would cry for over two hours, sometimes whilst being held. I remember that I felt like I was at breaking point. I was physically and emotionally exhausted. I didn’t understand why he would not sleep for longer than a two-hour period and why weaning him onto solid food was so difficult. It would seem that, at first, Charlie would enjoy cauliflower and cheese and eat certain foods with gusto (once night weaning improved his appetite) but then when I tried to feed him the same food on another day he would cry and refuse to open his mouth. I was also made to feel that I was being paranoid as the health visitors and all the books on weaning advised that this was simply all a part of the weaning process and that it could take 15 attempts of the same meal before you could decide that a child did not like a certain food.

I remember feeling like I was at breaking point because not only was Charlie not sleeping but also any hope I had of introducing solids improving his sleep had completely vanished. I ended up resorting to breastfeeding Charlie throughout the night again just so I didn’t have to listen to him scream. Charlie’s recurring cough/cold was also getting worse. He began to wheeze all the time and so I went to see the GP for what would now be the ninth time in just as many months. The doctor prescribed an inhaler to reduce the wheezing but he found no signs of a chest infection. I expressed my concerns that Charlie was losing weight and so the GP advised me to see him in 6 -8 weeks and to go to the clinic to obtain an up to date weight. However, because I had not weighed Charlie for about 7 weeks I decided to go and have him weighed the next day.

The weighing showed that he had only gained 5 grams in 7 weeks and that he had dropped to the 9^th centile. I told the community nursery nurse that I was going to stop breastfeeding as being up all night breastfeeding Charlie was becoming too much and his constant colds were difficult enough to deal with in the night. This was both the best and worst thing that I decided to do. The introduction of cows milk based formula resulted in Charlie waking up every hour and a half with coughing fits that at times lasted over an hour. I would be awake all night holding Charlie while he coughed and coughed. I remember waiting for what seemed like hours for him to stop coughing so that I could lie him down and I could cry to release my frustration and heartache. It was then that I decided enough was enough and that I was no longer going to be fobbed off by health visitors, GPs and nursery nurses and I was going to get a referral to a paediatrician. The following day I got an emergency appointment with the managing partner at the doctor’s surgery and told him that I wanted a referral. The doctor checked his head circumference, which was on the 75th centile and was at odds with his weight, which was only on the 9th centile, and he referred Charlie. However, the appointment was not going to be until February and it was now December. The health visitor also came to see me shortly after this as my husband, out of desperation had called her to say that he thought that I was depressed. It was during this visit that I explained that I suspected Charlie could have an allergy to milk, as his coughing would often be initiated by a formula feed and so she carried out a dietary assessment, which would be sent to the community dietician.

For the two weeks following the introduction of formula, Charlie’s wet sounding wheezy cough did not improve and he would still wake up with gas and abdominal pain. He was also still having hour-long coughing fits and so I went to see the GP to discuss the possibility of a cow’s milk protein allergy and hopefully be prescribed a dairy free formula. I ended up hitting a brick wall again as the GP said to see my health visitor/a dietician about my concerns as they would be much more qualified than her to discuss this. Charlie’s stools preceding these visits were also concerning me. At times they were very loose and bright yellow and at other times they would be extremely dry stool and green in colour. His solid and milk intake were also erratic during this time. I realised at this point that if no health professional could/would be willing to help Charlie then I was going to have to do it myself.

I decided to switch to a soy-based formula myself without a prescription and graded it with his normal formula. I also eliminated all dairy from his diet to see if my suspicions were founded. This seemed to improve things dramatically. Charlie’s appetite for both milk and solids improved and so did his sleep. His cough seemed to vanish and my son stopped whinging for the first time in months. He was also less clingy and I was able to throw a huge birthday party for Summer to make up for being such a bad tempered mother. I started to feel like there was a light at the end of the tunnel and that we were on the road to recovery. However, this was short lived as a week into the soya formula Charlie started to develop the same wheezy cough that he had before. Luckily a prescription had come through from the dietician for Aptamil Pepti, which is a partially hydrolysed formula, and so I began to grade this milk in with the soya formula but things did not improve. At this point I felt completely helpless as I felt like I had exhausted all my options. Charlie’s cough was also worse than ever and I knew that the only option I had left was to try and get a prescription for Neocate. However, it was the Christmas holidays and after watching Charlie deteriorate rapidly on Christmas Day I knew I had to go to the emergency doctors as every formula feed was like poisoning my son.

This was an extremely painful process as the GP at the emergency medical services refused to prescribe Neocate, as he didn’t feel like he knew enough about it. I said that if he wasn’t going to prescribe the milk then exactly what did he suggest I do since the Aptamil Pepti was only making him worse and I didn’t want to stop giving him his milk feed as he had already dropped three centile lines. He contacted the paediatrician on call at Accident and Emergency who advised that I feed Charlie small amounts at regular intervals. I was furious as I doubt very much they would have suggested the same advice if my son had a peanut allergy! I told the GP that if he didn’t prescribe it to me I would just buy it from eBay I was that desperate. The next day was Boxing Day and so I still wouldn’t be able to have Charlie seen by my own GP. However, a number of Boots stores were open and so I rang each one to see if any of the stores had any tins of Neocate I could buy. I went to the first store that said that they had some in stock and ended up paying £38 for 400g.

Charlie has since been prescribed Neocate by our GP and we have not looked back since. My baby is finally gaining weight as he should be and is approaching the 25^th centile after dropping to the 2^nd. He is sleeping better, no longer having coughing fits or bouts of colic and although we are still awaiting a formal diagnosis from the paediatrician I know that it is was Charlie’s intolerance to milk that was hurting him. I am just sad that it took eleven visits to a GP, three trips to the emergency doctors and all that pain for me to trust my own instincts and force someone to listen to me.