Since Zavier has had a kidney transplant, he’s been on immunosuppressants since he was only 2 years old. His initial immunosuppressants consisted of tacrolimus and mycophenolate.

Zavier was taking these for 4 years until he began to snore heavily and had pretty intense drooling. His father and I felt that the snoring was not usual and wanted to make sure there was nothing wrong, so we scheduled an appointment with his ear, nose, and throat doctor.

At his appointment, it was discovered that Zavier needed his tonsils removed. We scheduled him for surgery and it wasn’t long before he was being prepped to have his tonsils removed.

During the surgery, the doctors discovered that while his tonsils were quite swollen and definitely needed to be removed, he also had a lot of tissue growth in this throat, a side effect of the mycophenolate. His doctor switched him from Mycophenolate to Sirolimus and Prednisone. He also went through 3 months of infusions that helped fight the tissue growth and reduced his white blood cell count.

He was diagnosed with Post-transplant lymphoproliferative disorder, or PTLD, during this time. PTLD is an excessive build up of cells that can become cancerous if not handled in timely manner.

Thankfully for us, the treatments work and Zavier never officially had cancer, though the Prednisone was causing some changes in his behavior. There were some amazing changes. His appetite grew, leading to him trying new foods.

Zavier relies on a feeding tube to get the majority of his calories. His failing kidney, and possibly the autism, led to Zavier refusing to eat or drink by mouth. When he was 11 months old, he was only 11 pounds. He had a feeding tube surgically implanted, which helped him gain weight and helped him hit important milestones, such as walking.

With the Prednisone, he began to eat more and more. He also began to talk. There are studies on Prednisone and it’s affect on non verbal autism. This is a topic I love to dive into, but I don’t want to get too scientific in this post.

The Prednisone also had some negative effects. Zavier become irrationally angry, throwing his learning device at the walls, leaving holes. He also would hit, kick, and headbutt his father and I. We have a cubby bed that he got from the Make A Wish Foundation. It allows us to zip him inside, protecting us and him from his rage.

During this time, it was extremely difficult. We all cried, I had bruises, his father had bruises, the walls were riddled with holes and dents, and even he had bruises from flailing and hitting himself. He even chipped a tooth (thankfully it was a baby tooth and his adult tooth is now in and healthy) from hitting himself with his learning device.

I felt helpless during this time. I tried so hard to hold him and hug him, but nothing calmed him down. We had to let him scream. It felt like we were putting him in a cage. His siblings were scared of him and would cry listening to him scream. It was awful.

The Prednisone finally regulated in his system after about 6 months. He is now going to school and while he still has meltdowns, they are not as intense and a hug will often help cure it. His PTLD has not come back and he’s making progress every day with talking and eating (he’s now 60 pounds!).