We began this day with an eye appointment at Duke with Dr. El-Dairi, Pediatric Neuro-Opthalmologist. Rayden completed all the preliminary tests before doing a Virtual Reality Visual Field Test for a Research Study. The purpose of this study is to test a new way of measuring the peripheral vision using a device which can be worn as goggles rather than being a large instrument the patient must sit at. It was more like a video game. There will be approximately 500 subjects in this study at Duke. It was very interesting.
Dr. El-Dairi and I discussed Rayden's CVI and accommodations he needed at school. She seemed very upset about Rayden's shunt failure in February. The last time we saw her in April of 2022, she noted some thickening in Rayden's optic nerves and was worried about possible shunt failure. We were supposed to go back if needed but did not. She said she felt responsible because she could have possibly prevented his emergency shunt surgery in Florida! After examining Rayden's eyes, she noticed his left eye turning back inward. She stated this could be weak muscles from his recent seizure or even from the shunt surgery. She wants to see him again in three months. If it is still turning inward, she mentioned that a discussion of eye muscle surgery would be needed again. She concluded that his vision is better though, and gave him a prescription for new glasses.
After lunch at Heavenly Buffalo, we made a pit stop at Target to pick up some clothes because Rayden had wet all the way through (very unlike him). His MRI was scheduled for 4pm. Even though it was supposed to last 45 minutes, we chose not to sedate him. He is older now and we believed he could hold still. I explained that if he didn't hold still they would have to put an IV with medicine. That was all it took. Rayden was perfectly still and the test was over in 30 min.
The MRI revealed no bone marrow swelling, no fracture or bone lesion, normal joints, normal alignment of both hips, intact tendons and hamstrings, and no infection. This does not explain all of his pain. Since we have been home for Christmas break he has felt better, but he said it was because he wasn't walking as much. I tried to think of all the things that could be a symptom. His Peristeen hasn't worked in over two months. He was urinating a lot more than normal. All signs are leading to tethered cord. Dr. Vergun asked Dr. Ross, urologist, to take a look at Rayden's case. She scheduled an abdominal x-ray and renal ultrasound for Jan. 4. She mentioned looking for a kidney stone. He is scheduled for a Urodynamics Study January 16th, and they notified neurosurgery as well.
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