September 7- October 18, 2023 "Foot Swelling and Pain Journey"

August 11 Rayden got new AFOs. A few days later we noticed his feet and ankles were terribly swollen at night. At first, I thought it was the AFOs, but Bob said they would cause skin breakdown before swelling. Secondly, I thought it must be due to his circulation problems. Next, I thought it was the heat. Then, maybe he was on his feet a lot since school had just started. Later, I wondered if he was eating too much salt. After two weeks of this I began to get really concerned. Could this be his new seizure medicine or something more serious? I asked some older people with Spina Bifida who mentioned kidney problems, congestive heart failure, and lymphedema. I honestly didn't think it was to that extent, but my Mommy instincts felt something was wrong. I messaged all of his doctors looking for answers. His Orthopaedic Surgeon requested X-rays of his feet and ankles. His Urologist requested blood work to check Vitamin D levels, and his Neurologist wanted blood work to check kidney functions.  

Sept. 7 we went to Dr. Chiodo, pediatrician, to complete the blood work and x-rays. After seeing the swelling in his feet, she understood my concerns and ordered a CMP, CBC w/DIFF, Vitamin D, and Cystatin C. Everyone knows that Rayden's veins are almost impossible to find. Kelly Morris, his favorite nurse, was very upset when she had to draw his labs. You know you have the best health care providers when they pray before, during, and after drawing your child's blood. Kelly was unsuccessful on three attempts even though Rayden was super brave and perfectly still. We were all so proud of him. Kelly was literally in tears and begged me not to make her do it again. She asked Michelle Westbrook, Rayden's other favorite nurse, to come give it a try instead. Michelle also began with a word of prayer. Amazingly, she got the blood with one stick and Rayden didn't even feel it! Thank you, Lord! Now, as expected, Michelle is considered Rayden's #1 nurse and Kelly is chopped liver, haha. Afterwards, we went over to BJMH to complete the x-rays of his feet. 

All of his labs came back normal except Vitamin D. This should be greater than 30, but his was 25. Dr. Chiodo advised us to begin an over-the-counter supplement. His Orthopaedic Surgeon didn't see anything alarming on the x-rays, although they only took ankle films and she wanted foot, ankle and femur. She also noted that Vit. D deficiency could lead to bone insufficiencies and stated this could cause swelling if there are any micro-fractures. Of course, that worried me, so I made an appointment with her. I just wouldn't feel at ease until she saw him. 

Sept. 26 we went to Dr. Vergun, Orthopaedic Surgeon. She took x-rays of his feet, ankles, and tibias. These films showed that his tibiotalar joints appear more like saddle joints instead of hinged joints. There are no signs of joint collapse so this wasn't a concern today. His toes have a stair-step appearance, also not a concern for today. The biggest concern was the bones in the middle of both feet were diffusely osteopenic. Osteopenia is a loss of bone mass or bone mineral density. It is the stage before osteoporosis. Of course, this is alarming! How could this be happening? Osteoporosis is something older people get, not an 8 year old!! Dr. Vergun stated that some anti-seizure medications can cause bone density problems, so she advised me to discuss this with his neurologist. She also stated that although she liked his new AFOs, they may be a bit too rigid in the forefoot putting some pressure on his tibias. Since it's showing osteopenia, this could cause some stress reaction in his bones which could lead to some swelling. 

Oct. 18 we went to Dr. Yang, Epileptologist/Neurologist. She understood our concerns and commended me on the direction I have taken to address them. She agreed with checking his kidney functions and was happy to see that his labs revealed they were fine. She understood Dr. Vergun's theory about the medication causing bone density issues, but believes he hasn't been taking this medication long enough to cause the amount of osteopenia showing in his feet. She believes the swelling is neuro-vascular changes (poor blood flow) that are consistent with peripheral neuropathy (nerve damage). This is common for patients with Spina Bifida-Myelomeningocele. In other words, "the nature of the beast!" She recommended elevating his feet and consider taking Gabapentin in the future if the pain becomes severe. She was pleased to find his seizures have been better controlled (he hasn't had a seizure since June) and is deferring the surgical evaluation for now. 🎗