Nephrotic Syndrome

Paige T.


Paige was diagnosed with Nephrotic Syndrome in Sept. 2010. She was only 3 years old and prior to this time, she was a healthy little girl. Paige exhibited common cold/flu-like symptoms and after four days, she started to have edema, which was initially in her eyes then quickly progressed to her legs. As she became more ill, she was (mis)diagnosed by three different physicians. Finally, a fourth physician recognized the swelling in her legs and instructed us to take her to the local children’s hospital emergency room immediately. This particular doctor informed us that the swelling could possibly be due to her kidneys not functioning properly.

Paige was admitted to the hospital, and it was during this admission that it was confirmed that she was spilling abnormally high levels of protein in her urine. This admission was meant to address the high levels of protein in her urine as well as to assist with various other symptoms she was experiencing due to the severe edema throughout her body…

This was not expected and was a shock to not only her nephrologist but also to Paige and our family. Paige begins a new journey, and we will remain by her side.

Paige then had a biopsy completed that same week and was eventually diagnosed with Minimal Change Disease. She was prescribed a high dose of steroids which she remained on for over a decade. Paige has always been steroid sensitive and due to this she responded very quickly; however, she has had the tendency to relapse frequently, thus, she has had endure steroids for extended periods of time. In late 2019, we discovered her eye pressure was at a dangerous level during an annual eye exam which we discovered was because of steroid use. So therefore, after a second biopsy, confirming again Minimal Change Disease; Paige was then prescribed Mycophenolate and she remains on the medication today. With each relapse, however, she still must use steroids to return to remission.

Paige recently completed a genetic test to rule out a cluster of auto immune diseases within our family. The genetic test confirmed no connection between the family members’ conditions; however, it was confirmed last week that Paige is indeed positive for the genetic disease, Alport syndrome. This was not expected and was a shock to not only her nephrologist but also to Paige and our family. Paige begins a new journey, and we will remain by her side.

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