Mammalian Meat Allergy and Dementia

Louise’s story: Mammalian Meat Allergy and a dementia diagnosis

My mother has had Mammalian Meat Allergy (MMA) for over 10 years now. She now has dementia so doesn’t remember the tick bite, or where or when it was. The first time she had an allergic reaction she became covered from head to toe in large red welts that presented as hives. She used to tell the story of her first hospital visit where she said she was surrounded by doctors scratching their chins in confusion. They said they had never seen such a bad rash. My mother was in agony, with unbearable itch and pain, just from eating a small amount of mammal meat.

The next time she had a reaction I was with her. We were staying at a place that had home-made dinner in the freezer and I accidentally gave her a beef curry. She only ate a couple of cubes of meat when we suddenly realised. We both went to bed and in keeping with the 6–7 hour delayed onset, she woke up unbearably itchy all over and in agony again. I had to take her to hospital in the middle of the night and again the doctors had not really heard of this allergy.

My mother now has Alzheimer’s and up until this point she had been able to manage the allergy herself. Even though her memory was failing, she still remembered not to eat mammal meat. However, on three recent occasions she was given red meat in hospital-type facilities, despite the allergy being recorded in all her notes and profiles. The first was a physio rehab facility where she had been for 6 weeks. All was good until the week she was supposed to go home and then bang—a different chef who gave her a lamb meatball, of which she took two bites. I suppose they didn’t have the correct measures clearly in place. This episode progressed to facial swelling along with the full body hives, so this was a worry.

One month ago, my mother was first in short respite, and then longer respite. Unbelievably, on both occasions she was given mammal meat, despite the first place being completely across her allergy—she had stayed there a few times before and they had all been brilliant. But on this day, one of the staff members who was handing out ham sandwiches, handed my mother a sandwich. Two weeks later, it happened again at the second respite place.

Both these places called an ambulance on the doctor’s recommendation. Once when she was taken to the hospital with no symptoms, the doctor stated they couldn’t keep people with no symptoms. I asked him if he knew much about the allergy and he said ‘only a little’. The ambulance workers were not impressed, telling me rudely ‘she has no symptoms’, and the people at the hospital reception said, ‘she shouldn’t even be here because she has nothing wrong with her’.

In total, my mother is at risk now because she no longer has the ability to tell the difference between mammal meat and other meats and she can’t always remember that she is allergic to mammal meat. She is now in permanent care and hopefully there will be no more mistakes, but, based on past experience, I believe I need to be constantly vigilant.

Mammalian Meat Allergy is a difficult allergy to manage because symptoms generally develop many hours after eating the mammal meat, not immediately (like with other food allergies). This can make it difficult for the care staff to know how to treat Mum. However, we have found that it is best to get her to hospital if we know she has accidentally eaten mammal meat. The dementia diagnosis has added another complicating factor to Mum’s care. In a way, it is like having a young child with food allergy who is in someone else’s care full-time. I need to be vigilant and make sure that her care team understands her food allergy and know how to treat her if an accident occurs.