July 27, 2023 "Spina Bifida Clinic"

Asleep during renal ultrasound

Spina Bifida Clinic

    BMI- 18.91 (89th percentile)

    Weight- 73 lb. (86th percentile)

    Height- 4'4" (68th percentile)

We saw Dr. Theodore Yip for his mobility check up because Dr. Alexander was out sick. He completed the school forms regarding Rayden's emergency epilepsy medication, bathroom needs, and physical limitations. His biggest concern was Rayden's BMI of 89th percentile. Children whose weight and height exceeds the 95th percentile are overweight, and those who fall between the 85th-95th percentiles are of concern. Dr. Yip would like to see Rayden below the 50th percentile so he is making a referral for a video visit with a Nutritionist. Children with SB usually grow at the same rate as other children but they are not as active due to mobility limitations. At least half of children with SB are overweight by 6 years old. This can cause greater health problems. Mainly, it makes it more difficult to move around and maintain balance on weak legs and feet. It can also put more pressure on the skin causing it to breakdown. Looks like we have some work to do. 

Two toned kidney. Dark/light

Dr. Jada Dillner, Pediatric Urology PA, discussed the results of the renal ultrasound from today. His kidneys look normal but are showing some different color patterns so she wants to get updated blood work. Wendy said she would request the special team ahead of time so we don't have to fight them about his tiny veins. His bladder wall is thickening and there is minimal trabeculation, which are both normal for neurogenic bladder. Since he hasn't had a urodynamic study in 3 years, she would like to schedule one soon. We have been considering the MACE surgery in the future to help with flushing the bowels, so they need to decide which surgeon may need to use the appendix the most, or if they need to combine surgeries. We are switching to adult sized catheters for the Peristeen as well. 

Dr. Narotam, Pediatric Orthopaedics, discussed Dr. Vergun's plan for surgery when he is closer to 10 years old to straighten his legs and get him out of the twister cables. Although he found no curvature of the spine, he is going to continue to monitor him closely because boys tend to start showing signs of scoliosis between the ages of 10 and 12. His surgical scar is well-healed with no erythema or swelling. There is some slight prominence in the midline lumbar vertebral area where there is a slight drop off without significant asymmetry. The musculoskeletal exam shows hip abduction is about 30 degrees on both sides. The internal rotation differs though. Right is about 90 degrees versus 60 degrees on the left. His knee flexion contractures are less than 5 degrees on the right and completely absent on the left. He rests on the heals on both feet when standing and walking without his AFOs. Even though we have always done it, Dr. Narotam reiterated that we hold his hands when he is walking without his AFOs, like after a shower or getting out of bed. This can only be done for short distances. He noticed he is walking on the inside of his right foot and recommended his new AFOs go completely around the ankle for more support. He would like to do a video visit after we get his new braces just to see how they fit. 

Dr. Hildebrand, Neurosurgeon, discussed Rayden's MRI from today. His new, nonprogrammable delta 1.0 valve is working properly. The MRI demonstrates stable, well decompressed ventricles. She briefly discussed the process for epilepsy surgery should this be required in the future. 

Ice cream reward