Our family life was turned upside down this week. We finally got to see the allergy specialist after a long wait for 6 months. When the appointment started the lady did not take me seriously at all but thought I was just a hysterically worried new mother with no perspective. I had faced this so many times with the doctors here in England so I stayed calm although cried a bit. The doctor was like usually belittling everything I was concerned about and basically questioned my weaning as I seemed to limit my baby’s diet without 100% evidence. She did not believe the allergy blood test results really mattered after all.
Due to my small cry to remove my on-going worry she offered to do the skin prick tests. She tested all the most important nuts (hazelnuts, almonds, cashews and peanuts), dairy, eggs, soy, sesame and wheat. We waited for 15 minutes, I dressed our daughter so that she would not scratch herself as her skin got irritated straight away. When we finally removed the clothing her whole wrist was swollen (the hand where the test was made), so was the back. The doctor’s face was shocked. Quite often skin prick reaction is a small hive like bump and it is measured in millimetres. My daughter’s dairy test showed 3 cm swollen bump around her wrist, egg reaction was big too and cashew bump was huge and red, other nuts caused large reactions around the prick as well. This all happened only after a small drop of each test liquid and a little crack of the skin. Doctor’s tone changed drastically, she prescribed immediately an Epipen (adrenaline pen) to carry with us at all times in case our daughter gets life threatening anaphylaxis. She also told us to remove eggs, dairy and nuts from our house as apparently our daughter with these kind of test results could react to only smells. We are not allowed to give her any products that may contain traces of milk, eggs or nuts. This is tough and means lots of special products. Here in England almost every product contains traces of milk or nuts. I have been struggling to find even oats that would not be packed in a nut factory! Doctor told us she will be seeing us regularly from now on to follow the situation. We were told to come to the hospital for food challenges and not to try anything risky and new food at home. So we will have a soy and wheat challenge soon and after that a salmon and cod challenge. Challenges will start with extremely small quantities and special nurses will monitor her all that time.
After all this I am glad I trusted my mother instinct. Since my daughter’s excema flamed 9 months ago I had the feeling things were not right. This feeling was following me throughout the breastfeeding time as she reacted to everything I ate, same happened with weaning. Every doctor I saw during the past one year belittled the allergy problem, treated me as a hysterical woman and told me to feed my daughter everything, all the food including dairy and eggs. Luckily I did not believe in any of them and trusted my own inner instinct. During the past year I read so much research about food allergies, literally everything I could get to my hands. After the test it was clear that if I had given dairy, eggs or nuts to her we would have been playing with her life and in an urgent need of First Aid from ambulance (which in London does not always come quickly enough.)
Phew. What a long journey. Nine months of uncertainty, desperate searching and begging for help from different doctors and the sad fact that if I had not paid for the allergy blood tests in Finnish private hospital last summer we would not even be here as no-one believed me, hardly with the blood test results in my hand. Luckily everything is clearer now and we can breath and relax. It is very reassuring for me to have an Epipen at home as I know that I can help my daughter if she accidentally eats something inappropriate and I can win more time before the help arrives.
My mum who is a doctor said that during their pediatric lectures their professor was telling all the students to listen to mothers and trust mothers’ instinct even more than doctors should trust their own medical knowledge. I think that is so true. There must be something bigger than life in a relationship between a child and a mother. Mothers not only sense but they also feel and know if something is wrong. For me the biggest challenge was that when everyone belittled my instinct I started to doubt myself and thought the fear has taken over my instinct and ability to read my own feelings. It did not.
We will have a big challenge in future regarding schools and nurseries. In Finland where the allergy management is amazing and schools have cantines and children do not bring their own lunches in, the risk of your child eating something bad is very little. Here the things are very differently. Children not only bring their own food with them but people seem not to be very aware of allergies. I went to the nursery before Christmas to enquire a place for my daughter. I explained her allergies and highlighted the dairy allergy and the next question was could they give yogurt for her!!!!I was very disappointed. I know I will need to accept the worry that our daughter eats her friend’s chocolate bar or just ends up accidentally putting something inappropriate to her mouth will shadow our days. Still after all this nothing made me happier than to know for sure and to know how serious her allergies were and how cautious we should be in future. It removed the 9 months of uncertainty and fear. I think my baby girl has sensed my relief as she has been sleeping so well for the past two nights and has been smiling and enjoying her days in a way I have not seen for a long time.
She is such a sweetheart.
My brave little girl at the hospital.