This has been a hard summer for Tanner. His Ulcerative Colitis decided to show its ugly symptoms in full effect. Last year, while we were in the midst of moving and living at Heidi's, it got pretty bad. But, we doubled the medication he was on and it settled down, for a little while. By this April, we were back at the doctor discussing what could be done because his flares were more frequent and lasting longer. By May he was on a steroid (Uceris) which did nothing. By June, he was basically tied to a bathroom, missing out on a lot! The Lialda (anti-inflamatory medication he had been on since he was diagnosed in 2014) was literally going right through him- not being absorbed at all. He was still valiant with his diet but becoming more and more frustrated with it since it obviously was not helping much. In July we started Remicade Infusions. Six hours of sitting with an IV in, hoping it would work some magic. A lot of people have great success with Remicade. It did nothing for Tanner. Nothing. We put him on another steroid-Prednisone- as we tried a total of 4 Remicade infusions at a very high dose hoping it would do some good. The prednisone as helped but when we weaned him to a lower dose, all the symptoms came back worse than ever, so we knew the Remicade was not the answer for us. Today, we had another doctors appointment to discuss the next step. Another drug, this time a shot given every 2 weeks.
I hate that I have to give my baby all these powerful drugs. I hate to see him missing out on his childhood because he has no energy and lives in the bathroom. His diet is not real fun either. We are really hoping we will find a medication that will give him relief as well as allow him to expand his diet a bit. Tanner has been through so much in the last 2 years. He has amazing perseverance and I am so proud of him.
Getting the infusions...
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