As I previously mentioned, this week was jam-packed with appointments for Brennen.
We started the week by getting him fitted for shoe inserts that are meant to discourage toe walking. The inserts are made of metal and are designed to make the soles of his shoes less bendable. I think Brennen saw the inserts as a challenge. Similar to when I tell him to stop jumping on the couch. The more I tell him to stop jumping, the more he jumps. In this case, Brennen realized the shoes made toe walking more difficult, which made him even more determined to do it. And like every determined three year old, he figured out a way to get what he wanted.
A few days after the appointment with the Orthotist, we paid a visit to Brennen’s physical therapist to evaluate how the inserts were working and discuss other options. Immediately, the therapist recognized that he was toe walking despite the shoe inserts and asked if we had made a decision in regards to casting or bracing his legs. I was prepared for this conversation as the hubby and I spent a lot of time researching and talking about our decision. I explained to her that we were not on board with either option. We would understand the need for it if he exclusively walked on his tippy toes. However, Brennen can and does walk flat-footed at times. In addition, his range of motion in his legs and ankles has not been limited due to his toe walking. I told her we would prefer to keep any eye on him and if anything changed for the worse, look into those options at that time. And guess what? She agreed! She said she would release Brennen from PT as long as we agreed to do the exercises and stretches that she taught us and get back in touch with her if anything changed. Yay!
Later in the day after the PT appointment, we had a follow-up appointment with Brennen’s neurologist. I had prepared myself for this appointment by putting together a small folder that included our family medical history in regards to toe walking and scoliosis, notes about anything out of the ordinary in regards to Brennen from conception till now and a list of questions. The folder helps me feel more in control of a situation that I have very little control over.
The neurologist first reviewed the results of Brennen’s x-ray. He confirmed that it indicated 13 degree scoliosis but also agreed with us that it was possible that Brennen was not standing appropriately for the x-ray. (Picture squirming & uncooperative 3 year old in front of a x-ray machine.) Moving forward, Brennen will get an x-ray every 6 months to monitor the scoliosis. As of now, no treatment is required. The MRI was reviewed again and the doctor reiterated that a mild version of CP can not be ruled out. In regards to toe walking, the neurologist agreed that the shoe inserts were not beneficial and wholeheartedly recommended braces. Also known as ankle foot orthoses or an AFO. So much for my victory dance earlier in the day. His argument was that Brennen’s foot could become deformed due to amount of pressure being placed on his toes and the tendons in his legs may not grow as long as they should due to the amount of time Brennen is on his toes. Although, this was not what we wanted to hear, we recognized that it was better to do the bracing sooner than later as the average time in an AFO is 3-12 months. We decided to try bracing now so that Brennen would be out of them before he started pre-school next year. So next week Brennen will be seeing a new Orthotist (his doc didn’t like the previous one the pt person sent us to) to get fitted for an AFO. I also inquired about the possibility of Brennen having some sort of sensory disorder. Here is a little background as to why I suspected a sensory disorder. It took Brennen until he was about 2 years of age before he would walk on grass, he still will not walk on sand, he has very sensitive hearing and is easily overwhelmed in crowded places. After some discussion, the doctor agreed with me and recognized that part of his toe walking may be due to sensory issues. However, insurance companies do not recognize sensory disorders as a medical issue, so any professional treatment would be out-of-pocket. In all reality, we have been treating Brennen’s sensory disorder on our own. We gradually expose him to things that make him uncomfortable until he becomes desensitized to it. We will continue to do this and we will research some ideas on the internet as well.
Although this week did not turn out exactly as we would have liked, we recognize that these things are do-able. The good news is that once the AFO is on, we will greatly reduce the number of appointments we need to go to. We will only have to do a x-ray every 6 months and visit the neurologists’ office every 3 months to see how the AFO is working. I am looking forward to a time in the future when all of this is just a vague memory, but in the meantime we are going to make the best of it and recognize that despite our challenges we are still very lucky to have so much happiness!