I don’t write many personal posts on the blog, but I have really wanted to share this story with you. Mainly because it has meant a lot to me to hear other people’s story with Idiopthic Toe Walking. Its not something I really heard much about, and still don’t. We’re a small community. So here’s our story in hopes that it encourages you! (sorry its so long, haha)
Be sure to check out my friend, Mary’s post at Not Before 7 for her story on Idiopathic Toe-Walking.
What is Idiopathic Toe Walking?
First off, what am I even talking about? Idiopathic toe-walking is a diagnosis of exclusion. Meaning, you gotta rule out other reasons for a child walking on their toes and this is what you have left. The professionals we have talked to (and the research we have done) say that idiopathic toe-walking is the brain not having the muscle memory to know how to walk. In other words, the neural pathways have not been formed, so the brain automatically tells the body to walk on toes.
Some other causes of toe walking include:
- Sensory, either sensory seeking (desire deep pressure input) or sensory avoidant (doesn’t like the feeling of the floor)
- Poor core strength
- Shortened Tendon
But with Idiopathic toe walking, the toe walking IS the problem, its not a symptom of something else.
Isabella, our oldest and now 6, has always been a strong, bright, and motivated kid. And it seemed she started on her toes as soon as she started standing. And while it is typical for kids learning to walk to get up on their toes, usually they grow out of it by age 2.
But with Izzie, it wasn’t just when she was pretending to be a ballerina, it was all the time. I felt like all I did was nag, “flat feet.” In fact, my younger daughter grew up believing “flat feet” are what you call flip flops. We tried reward systems, secret signals to remind her, riding style boots, everything. But even when she was walking on her flat feet, she would either splat her foot down or lead with her toe, not strike the heel.
Meanwhile, well-meaning people at church and in the community would say things (and still do) like, “What’s the big deal?” “I’m sure she’ll grow out of it” “Isn’t that cute?” “Well my daughter did that, and I just told her to stop.” Yes, I did tell her to stop, but the reality was, I was beginning to realize it was out of her control. I could tell her to walk on her flat feet, and she would comply, only to be right back on her toes the second her mind started thinking about something else.
So each year, I would ask our pediatrician, “Izzie is still walking on her toes. Should I be worried?” At her 3 year old well visit, the doctor referred us to the county for evaluation. When I spoke to them, they said they couldn’t really help us if the toe walking didn’t impact learning, and it didn’t. But they also said that as long as the child is able to stand flat footed on the ground and lift her toes up at all, they typically do not intervene. At this time, Isabella was able to do this! yay!
A year later, she was still up on her toes, but started to lose her range of motion. At her 4 year old check up, her pediatrician recommended a local pediatric rehab therapy group called New Beginning. By the time we got to her first appointment, she could no longer stand on her flat feet without saying it was very painful.
I was so impressed with New Beginnings. Our therapist was so thorough in her evaluation and took time to explain why she thought it was an issue of shortened tendons – because the other reasons didn’t apply and she always seemed to walk on her toes. She recommended immediate serial casting, as in that day.
I was devastated, feeling like I had failed Izzie. What if we had intervened sooner? What if I had…? Down the rabbit hole I went while in the office, crying with this woman I had only known for one hour. But forward we moved.
Unfortunately, our insurance did not cover the Physical Therapist to do the casting. They referred us to a John’s Hopkins Orthopedist (who we also ended up loving).
I had never heard the term Serial Casting before. Is she going to kill people with these casts?!? haha Basically, the doctor stretched Izzie’s tendon as far as it could go, and casted in that position. Each week to two weeks, we would go back to have that cast cut off, tendon stretched (fingers crossed a little further) and then re-casted. In all, Isabella had 5 casts over 8 weeks and it wasn’t until the final cast that we made any ground.
For the first couple casts, she continued to walk up on her toes! Crazy, right? But then the doctor started casting out beyond the toe to prevent that. The cast looked pretty silly but it worked.
I was really overwhelmed by the idea of casts, but Izzie really rose to the occasion. She complained very little and they didn’t slow her down at all. Riding bikes, climbing trees, playing soccer with her friends in the yard. You name it. And her friends at preschool were so nice – some even went home and told their parents that they wanted pink casts like Izzie. HAHA
The down side – the smell. Sponge baths and stinky casts. Also, most people in casts don’t run and play. They were a couple times Izzie has sores. So whenever we changed casts, I brought a wet washcloth in a ball jar with Tea Tree, Lavender, and Frankincense Essential Oils to wash her feet and then put whipped coconut oil with the same oils on her legs to moisturize. The doctor always joked she could smell me coming. And for the most part, her legs looked amazing. Except the one week the tech refused to let me put on her oils, and the next time we took off the casts, her legs were so tore up! boo.
Anyway, after the last cast, she finally had about 15 degrees of stretch in each leg! Praise God! It really did feel like our own miracle. The orthopedist said to do physical therapy over the summer and we would come back in the fall for surgery if she lost the stretch. This was her preschool graduation, 3 days after the casts were removed. Look at how she bends at the ankles!!
At this point, we (especially me) wanted to go back to New Beginnings, the original physical therapy clinic, but they stopped accepting our insurance. And as I looked around for a new Physical Therapist, I was SHOCKED to find it was very difficult to find a PT who had any experience with toe walking, let alone expertise! We ended up going to the outpatient center of our local hospital, within the John’s Hopkins system, to see a pediatric PT.
She was kind and did a great job maintaining the stretch the casts had given us. Izzie was doing so well, she released us from PT after 7 weeks (even though it was originally recommended we have 4 – 5 months of PT). So obviously this raised some red flags, but I pushed them to the back of my mind and rejoiced over finally being done.
Back up on her toes
Within a month or two of being released from physical therapy, Izzie started walking on her toes. Not all the time, but slowly more and more.
We went back to the Hopkins PT twice, who said that she just needed to build those muscles and recommended that we just let her be a kid. Go to the park. Ride bikes.
Well, we do and she just does all those things on her toes. *so frustrating*
I was so upset and unsure and overwhelmed. But we waited. Waiting to see if it would get better on its own. It didn’t. The toe-walking just got more and more frequent, until I felt like all I was saying all day long was “flat feet.” But finally, we decided to go back to New Beginnings, even if it meant paying out of pocket. Fortunately, they now take our insurance, although it is out-of-network.
Back at New Beginnings with a different PT (the previous one had moved away), I was reminded why I loved them so much to begin with. Natalie, our current PT, evaluated Izzie, listened to my concerns and validated that “being a kid” isn’t going to correct the problem. Her gut was that it was a brain issue – she doesn’t have the neural pathways created to walk correctly. But she collaborated with other PTs and an occupational therapist in the office to rule out everything else, just to be sure.
Everyone agreed that we were left with Idiopathic Tow Walking, again, a diagnosis of exclusion. What she said next floored me – when they serial cast, they always follow it with braces for 6 months. (WHAT?!?) Because once the tendon is lengthened, the brain is still left not knowing how to walk. I was devastated. Again questioning myself. Why didn’t we just pay out of pocket? Because here we are a year later with time and money wasted.
She recommended we start braces to force a heel strike with her walk and re-train the brain. I was overwhelmed (are you sensing a theme?). So I called the pediatrician and my friend, Mary (whose daughter had been through the same thing) who both said that if it were their child they would exhaust all possibilities. I then talked to the Orthopedist who said she prefers to re-cast (because you can’t take them off and its less of a battle), but would support either.
So after lots of talking it over with Ethan, and lots of prayer, we decided to move forward with bracing. For me, it is a scary prospect because bracing is a much longer commitment than casting, especially if Izzie is uncomfortable or resistant to wearing them. But also, I was/am worried that when Izzie starts at a new school next year she will be the weird kid who wears braces. I’ve decided that with both, I’m going to trust God, that whatever happens, this experience will hopefully mold her into a more compassionate and kind woman of God.
Well, last Friday we just got her braces. She was very nervous because she thought they would have to be cut off like the braces, and she worried that they would hurt or be uncomfortable and there would be nothing she could do (wise girl, right?).
At the appointment, we were thrilled to see they could go on and off and she loved the customized colors! We went straight from PT to Target to buy some shoes. When we got home, she had been wearing her shoes and braces for about an hour and had dark sores that lasted all evening.
The PT came in to the office on Saturday (just for us – wow!) and adjusted the braces and we are slowing wearing them an hour on, an hour off until she can tolerate more and more.
Sometimes she’s great about putting them on (usually when she can show them off to other people who haven’t seen them) and other times she is crying and says they hurt, even if the sores are minimal. But we press forward and hope that this is just the transition and that her feet will toughen up.
The Road Ahead
Its a long road ahead. 6 months to a year of braces and even then, there’s no guarantee that it will work. I hope it does and I hope its smooth, but we press on with optimism (and a little, okay sometimes a lot, of anxiety) and the belief that God is good, especially in the struggle.
May 2016: For an update on where we are in the journey, read more here + a fun little DIY project!
As Always, thanks for reading!