This past Monday Jacob had three appointments. Nephrology, Rheumatology and Orthopedic. What a long day that was! It was good I could coordinate seeing all three doctors because I only needed to miss the one day of work. Having a child with a chronic illness can be tough to manage being a working parent. It has been much easier now that things have been relatively quiet for him and we only need to go every few months or so. During eye or joints flares, that is another story!
We saw Nephrology first. Jacob has been having hematuria for some time now. He had a bout of this when he was five years old and it had stopped for a long time. It has been going on for quite a few months again. He started seeing the Nephrologist last summer. We still don't really have any answers. An ultrasound was negative. Jacob's dad and I were negative for the condition. (it can be familial) This time the doctor ran some extensive labs on his kidneys. I counted 21 tests on the lab slip. He is looking for an immunoglobulin disorder to Lupus and is rechecking the kidney function and ANA etc. If these blood tests come up negative then we will continue to follow the Hematuria and watch for any changes. The doctor has thrown around a possible biopsy, but decided at this point it isn't necessary. Thank God! Hopefully we get the blood work results soon!
There was some slight stiffness in his left hip but she could push past the stiffness. We decided to try to wean Jacob off of Humira. We are going to start slowly. Instead of giving it every 2 weeks we are going to go to 3 weeks. He has been on this for almost 4 years. I am nervous, but I feel as though we need to try! So I will need to watch closely for any trouble with his joints or his eyes.
The last appointment was with the orthopedic. Jacob had his usual xrays to check the curvature of his spine. His spine is curved at 16 degrees. This is still considered minimal. With puberty the scoliosis can worsen. So we are so glad that it is pretty stable. We won't need to return for another 6 months to the orthopedic.