When the bloodwork came back from her 4four-year-old check-up, our pediatrician discovered that Alyssa had high cholesterol. In response, we immediately changed her to a vegetarian – almost vegan – diet, but it had almost no effect. We were referred to a cardiologist, who, after months of monitoring, couldn’t figure out what was the cause. And because Alyssa was too young for cholesterol medicine, there appeared to be nothing we could do.
That was until her next check-up, when a urine test came back with high levels of protein. It was then that we were finally referred to a nephrologist. A renal biopsy revealed that Alyssa suffers from Nephrotic Syndrome brought on by FSGS with C1q Nephropathy. After a few medications did nothing, it was determined that Alyssa was steroidresistant, cutting the number of potential treatment options in half.
Alyssa has been on a low sodium, low sugar, and recently low potassium diet, and she needs a daily vitamin D supplement. Last week, Alyssa started a clinical trial of lipid apheresis, also known as LDL apheresis. It is a process which separates her blood’s plasma and runs it through a machine similar to the one used for dialysis. It then filters and removes cholesterol containing LDL fats (lipids) from her blood. She had a hemodialysis catheter placement surgery a few weeks ago and is in the early stages of treatment. The hope is that after nine weeks of lipid apheresis, Alyssa will be in remission.