The story of Flynn
We received Flynn’s diagnosis July 17 but had been on the journey to finding out what was happening on the inside for him since birth.
Fast forward to the day we received his diagnosis and it was a really tough time, we were already well and truely in the medical system with other health issues so we had some kind of knowing of what was ahead of us. I was told on top of his diagnosis Flynn was considered ‘medically failing’ it was a hard pill to swallow.
As a family we worked through what we could, trialled Losec, the 8 food elimination diet and still no clear scope 2 years on. In May 2019 he had gained 200grams since July 2017 and we were put on Flixotide. We got good scope results but he was having side effects from it so has been changed to Pulmecort, we have noticed his weight has dropped again since the drug change and he struggles to eat new foods and has the symptoms back again. We are currently wheat, dairy, soy, and seafood free.
We are so incredibly proud of our young man and his attitude, he generally doesn’t let it get him down and we experiment in the kitchen so he doesn’t miss out on foods. Living 1700kms away from our specialist means flights, hotel rooms and being away from his dad and siblings several times a year and he takes it all in his stride. Love my tiny human, he has taught me so much and we will find a way to get him into remission without side effects.