What symptoms did your child experience?
“When Lily was 2 weeks old I knew that something wasn’t right so I took her to the GP. She cried constantly after every feed, she was feeding every hour and only taking 1-2 oz of milk at a time and she cried every night into the early hours. The doctor told me it can take a while for a newborn to settle down so I went home feeling happier that they didn’t think anything major was wrong.
By 7 weeks old Lily’s skin was red and blotchy and the crying continued relentlessly. One day she started turning blue and was having difficulty breathing while I was changing her. Her breathing improved when I picked her up, but I knew this wasn’t normal and took her immediately to the doctors.
At 8 weeks old we had to take her to the local doctor while visiting my mum in Holland. He diagnosed her with reflux and gave us medication. This helped a bit with the crying, but not completely. When we returned to the UK, I went back to my own doctor I was told that reflux did not exist. I was really confused and exhausted. Being a single mum with few local friends and family, I felt very alone and that no-one was listening to me. I even started to doubt myself.”
What was your experience of the diagnosis process?
“After months of visiting the doctors every week, Lily appeared to stop breathing again when she was 6 months old so I rushed her to A&E. The doctor said that she needed a referral to the children’s hospital for tests.
When Lily was 11 months old we went to an appointment with a specialist at the local children’s hospital. The consultant listened to my story and said almost instantly ‘I think she is allergic to cow’s milk’. I couldn't believe it as I had never even thought that this could be the problem. He prescribed us some medication to help Lily as she had been badly constipated since birth then passed us on to the dietitian. The dietitian was very helpful and gave me lots of detailed information about how to manage Lily’s cow’s milk allergy.”
What is life like now?
“When Lily was finally diagnosed I cried while sitting in the hospital. It was such a relief to hear that someone understood what we had been through and that there was in fact something wrong with my baby. We could now move forward and things would start to get better.
I saw a change in Lily straight away once cow’s milk was removed from her diet. She became a happy, playful little girl and she finally slept through the night. The first time she had ever managed that!
I found CMPA support, an online support group run by mums with CMA babies, the week after Lily was diagnosed and they have been my lifeline. If I’m ever worried about anything or need to ask a question someone is always there to listen and help out. I don't know where I’d be without them.
Unfortunately it hasn’t been all roses for Lily since then. She is now 25 months old and has multiple food allergies but I knew straight away what was happening and was better prepared with the help of my doctor and the CMPA support network.”
Do you have any advice for other parents?