Gethin, my little boy, is our first child and the early months were incredibly hard work; much harder than we were expecting. He’s had severe reflux since he was seven days old. I was discharged from hospital two days after a planned c-section (breech presentation) and he had been very unsettled during most of that time. Our midwife came to see us the following morning and it had been another terrible night, with Gethin screaming and seemingly unable to feed. The midwife weighed him and discovered he had lost nearly 14% of his body weight so on the very same day we found ourselves back in hospital where we received additional breast feeding support. During the first evening, we were advised to introduce formula ‘top ups’ because there seemed to be a delay in my milk coming through and they were concerned about the weight loss and jaundice. The midwives commented on how unsettled Gethin was and ended up taking him out of the room during the nights in order for us to get some sleep. It was totally exhausting.
Gethin was a fractious baby from day one really, and it just seemed to get worse and worse. We didn’t realise that it was a reaction to the formula that was causing much of the problems. He was having lots of diarrhoea and was being sick but also wanting to feed all the time. Feeding would take forever and he seemed to be in so much pain with what we thought was trapped wind. The health visitor gave us some Lactose free formula to try but it didn’t seem to help. The GP thought it was a bad case of colic and the word ‘reflux’ was mentioned first when Gethin was 5 weeks old. However, because Gethin wasn’t losing weight the Doctors didn’t seem to be too concerned. Gethin didn’t really sleep at all, we were lucky if we got two hours unbroken sleep a night. He would scream and thrash around and seemed to sleep only when he was exhausted– it was really distressing for the whole family. The worst time I remember was a 13 hour period when he would not stop crying and screaming. Earlier that evening we had been sent home from the Childrens Assessment Unit at our local hospital having been told that we were overfeeding him and to give him a dummy. Fortunately our Health Visitor visited us early the next morning and sent us straight back to the hospital. Overfeeding was just one of many the reasons we were given to explain Gethin’s distress.
We saw many doctors back then. In fact, one of the problems was that we were seeing different doctors every time we went to hospital. Gethin would be screaming and they would ask me to start from the very beginning of what the problems were. It was very frustrating and distressing because we felt we were getting nowhere. So in the end, what I used to do was keep a daily diary of where we were, what we were doing and how he was reacting so that if we went to hospital I could just print it out and say ‘here read this, and could you put it in his file’. We were frequently told that because he was a healthy weight, there was no real problem and that things would improve as he got older.
We eventually found out that Gethin’s severe reflux went hand in hand with an allergy/intolerance to cows’ milk. This was only diagnosed when Gethin started having blood in his stools. He was about 8 weeks old at the time. Once we knew this we started making progress and his formula was switched to a hypoallergenic one and then later to an amino acid based milk. Apart from avoiding cows’ milk the Doctor also told us to avoid any sheep, goat and soya products. It took many months to get the right combination of formula and medication. Partly, I think this was because as first time parents we were sometimes dismissed by the health care professionals that we saw. I also think it can be hard to be assertive when you are totally and utterly exhausted. I would recommend to any parent in our position not to give up and to always push to go back to see the paediatrician if things don’t seem to be right. Parents know their own baby!
Gethin is now 20 months old and I am pleased to report that he is a happy, and very lively little boy who loves his sleep!
Getting a diagnosis
How can you find out for sure if your child is allergic to cows' milk? What will your child's doctor do to confirm the diagnosis?Read More