Allergy Stories: Grace who has 2 sons with CMPA

For the first allergy story of 2016 I spoke to a friend of mine Grace who has 2 sons with CMPA (cow’s milk protein allergy). Interestingly they had different symptoms to start with so it wasn’t much easier to diagnose her younger son when he started showing symptoms. 

Thanks Grace for taking the time to do this interview. ​​What age are your boys and what food allergy do they have?

Tadhg is almost 4 and Rune is 18 months. The both have CMPA.

How did the symptoms of CMPA present themselves and was it the same for both boys? 

Both boys presented differently. Tadhg’s symptoms were more unusual. When he was born he was a very gassy baby. He expelled gas very frequently and loudly! In the hospital when he was born he had far more bowel movements than the other babies. When he was about 2 months old he began to pass mucus during his bowel movements and then began passing mucus with some blood in it. At this point we brought him to Crumlin and he was tested for Lactose Intolerance. He was diagnosed with it and I was advised to end breastfeeding and feed him Nutramagin, a lactose-free formula. He improved for a few days but then became worse than ever. His bowel movements seemed very acidic and he had very raw and painful nappy rash, and his bowel movements had a very strong cheesy smell. He then had an appointment with a Paediatrician and he was put on Neocate formula, in which the proteins are broken down into amino acids so that the body doesn’t react. This thankfully worked and he thrived thereafter.

Rune was in constant pain with his allergy. He fed constantly and therefore his system had no break from the milk. He would wet through nappies in minutes and have bowel movements every hour at least. He would wake from sleep every seven minutes and his cry suggested he was in pain. We had been advised that he would likely be CMPA by doctors so we were alert to it, however making the decision to stop breastfeeding your child is not one you make without just cause. So Rune was one month when we switched to the Neocate, when we were certain there were no other options. He too had severe nappy rash and his bowel movements began to get the cheesy smell also. At that point we switched him to Neocate and within hours his pain was reduced.

How did you find the process of getting a diagnosis? Did you find it easier to get a diagnosis for Rune as his brother had also had CMPA and you had the experience and the family history?

Getting a diagnosis for a newborn baby with no specific family history of the allergy was not easy, to say the least. There was such a delay in getting results for the Lactose Intolerance test via the GP so we had to go to the emergency room in Crumlin. They were amazing and diagnosed him in an hour. Getting an appointment with a paediatrician when the first formula didn’t work was difficult and drawn-out. The paediatrician prescribed Neocate formula suggesting that it might be CMPA. He suggested that this was the only option and if that didn’t work that there was nothing else to be done. 

Technically I guess that this means neither of the boys were ever actually given a diagnosis by any doctor…that really speaks volumes about the experience of the children who suffer from these allergies and their parents. I constantly was asked if I thought my child was unwell, out of sorts etc etc. I felt nobody wanted to take responsibility for giving a professional medical assessment of my baby.

Both are home with me but Tadhg has spent time in preschool. It is difficult to explain his allergy to others, people find it hard to understand that they cannot have anything with any type of milk.