Aleksandr Lett
Aleksandr Lett was born on the 30th of December 1996, three weeks early. He had a weak suck and we used premie teats that are a softer rubber. After five weeks of constant screaming he was diagnosed as having gastric reflux, but unfortunately the only treatment able to be prescribed by a GP was ineffective.
When Alek was nine weeks old he had his first major infection (having had minor colds before then). I put him to bed for a morning sleep and went to sleep myself. When I awoke and he was still asleep I checked on him and he was so hot I almost dropped him. I called the ambulance and they took us to Starship Hospital. When we arrived Alek was taken straight to the Resus room as his temperature was skyrocketing and he was dehydrating badly and going into shock. They admitted Alek and did many tests. His temperature hovered above 40 degrees for nearly 48 hours. After 5 days in hospital we went home with a diagnosis of ‘unknown viral infection’. I was later to read in his notes that he had bacteraemia but this was not noted on his discharge papers. Prior to discharge the Registrar also put Alek onto proper medications for his reflux. I had believed this experience was a nasty one off for our family. It was the beginning of 5 months of constant hospital admissions and testing. Four days after discharge he was back with pneumonia and rotavirus. Over the next few months he developed bronchiolitis, another bacteraemia, cellulitis, viral sinus infections, and had an inguinal hernia repair. After Alek’s 6th admission the ER consultant asked our permission to test for immune deficiency. We had no idea this even existed!.
We then leapt onto the merry go round of blood tests, hospital clinics, hospital admissions, and continual GP visits. We received constantly conflicting advice and diagnosis as his test results gave unclear results. The first answer was to put him on prophylactic Augmentin and this only resulted in penicillin resistant strains of pneumococcus being detected in swab tests. Through all of this I anchored myself to KIDS Foundation.
Alek’s infections then started to become more chronic and less acute. He had sinus and ear infections that would last months until he deteriorated to the point where he was hospitalised. I have constantly struggled with specialists who practice evidential medicine and only treat based on x-rays and blood tests, and vaccine challenges. They refuse to acknowledge the person and their symptoms. Quite frankly I’ve had a gutsful and now choose those that interact on an ongoing basis with care. I interviewed our new GP, when we moved, and am blessed (due to medical insurance) with the ability to choose private specialists.
Ironically as Alek has got older his blood results have worsened as his symptomatic condition improves. We finally removed him from full time daycare in October 1998, when he had a total of 7 separate infections all at the one time. We moved back to Auckland and I am retraining as a teacher, whilst my mother takes care of Alek. He only goes to daycare for socialisation and on the odd occasion when my mother works. He has been well for so many months now I doubt my own sanity!!. However as I write this in April 1999, he has succumbed to the first attack of bronchitis this year. We look forward to our future, and to extending our family. We could only have come this far with the ever-caring support of KIDS Foundation and those particular members to whom I have come to know.
