Jocie

Idiopathic Toe-Walking: Our Journey

March 30, 2015 | by Jocie (email) |

Idiopathic-Toe-Walking-One-Project-Closer

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.

Our Story

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.

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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).

Serial Casting

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.

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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

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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.

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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!!

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Physical Therapy

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.

Bracing

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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?).

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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.

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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!

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31 Responses
  1. Jacque says:

    Sweet Izzie! What a lucky girl to have such wonderful parents who pay attention and will do anything for the best for their girls! Then again from the looks of her I’d say you and Ethan are the lucky ones! Thanks so much for sharing your story. I will keep Izzie and your family in my prayers! She’s strong and I know she can do this!

  2. Jocie – thanks for sharing your story. That sweet Izzie is strong like her momma 🙂 Praying for you and your family!

  3. Patty says:

    Jocie your daughter is absolutely beautiful. Our sons were all born bow legged and pigeon toed. Our second son had to wear casts before he was one year old. When you mentioned the smell from the casts, it all came back to me and I actually felt sick to my stomach. He is now 6′ 3″ and has beautifully straight legs – all my sons do now thank God. It was very brave of you to share this story. I will remember your family in my prayers.

    • Jocie says:

      Hey Patty, Thanks so much for your prayers! my brother and sister both had casts on their feet when they were under one bc they were pigeon toed too! i’ve often wondered if she got her feet problems from my side. 🙂

  4. Staci says:

    Jocie,
    Thank you for sharing your story! I never comment on blogs, but this post hits close to home. My son (also 6 like Izzie) is a toe walker, and has been since the beginning, without a diagnosis. We are constantly reminding him, “Feet!” His peds brushed it off at every checkup, saying he will grow out of it. After having enough of them brushing it off and him NOT growing out of it, we got him in to see a podiatrist, who referred us to a PT, who then referred us to a place to get some orthotic shoe inserts made. We did those for a while, and they didn’t help. So he is now in braces like Izzie’s. He just got them in January. We’re not seeing much improvement, but I’m holding out hope. I had never heard of “Idiopathic Toe Walking”, and thanks to your post, I now have something to go on, because researching it has been difficult and nobody seems to understand what exactly it is. I do hope you’ll post a follow-up on how she progresses with her braces. Prayers to you and your sweet girl!

    • Jocie says:

      Oh Staci, I’m so sorry! how frustrating for you!! i’ll be praying for you and would love to hear how things go.

      I often feel so thankful that we are so close to so many great doctors, medical professionals and hospitals, but even here it has been hard to find experienced professionals with this. :/

      Good luck to you guys and keep in touch!

  5. Naomi says:

    You’re beautiful. I have tears in my eyes. You’re such a good mom, friend, cousin, and aunt. I’m so sorry this has been such a frustrating, uncertain, and painful process – all with the unknown of it will really work. Love you! and we LOVE Izzie!!!

  6. Gwen says:

    Oh Jocie! You are such a strong woman of faith. I so admire your strength and perseverance.

    I’ve never heard of idiopathic toe walking. Brendan still walks on his toes some, but nothing like Izzie.

    My prayers are with you guys! All things work together for good, yo.

  7. Izzie is lucky to have such a strong, sweet mama to help her through this!

  8. Chris Paulis says:

    Jocie, I’m so glad you live close enough to hug daily! We love you so much and pray for you to persevere!

  9. Laura says:

    I was sent to your blog by a friend, Iris, as my son just got his first brace. He has a different diagnosis. He had a stroke in utero so he has a weak right side and toe walks on that side. It’s gotten worse with age, tendon shortening as he grows. He’s been in an Early Intervention program since he was 1. I don’t love his PT, she kept saying she was against orthotics, liked to see if the problem corrected itself. Our occupational therapist is more for intervention but the orthopedist was more for less intervention so at 2.5 he’s only getting the braces now. And now the PT said she thinks it was a good idea. I think she would have recommended it earlier if she knew we’d go through insurance and not our Early Intervention program (which would be paid for by the state) because it would have been a lot of paperwork for her! She’s on the lazy side. The OT was concerned we lost time but the Orthopedist didn’t think so. I’m waiting for shoes to come in that she supposed to be good for orthotics, esp if it’s only on one foot. We shall see! I’m anxious to see how my son does with the braces. He got a Scooby Doo pattern on his. He doesn’t know Scooby but loves dogs! The orthotic guy said designs are important psychologically for the child and helps them want to wear them. We don’t know how long he’ll need the braces but I’m relieved something will intervene for me and I can stop saying “put your heel down!” to a toddler who doesn’t understand me! I wish your daughter well on her journey. You see on the right track. Try not to feel guilty for “lost time”. We want to trust professionals and their word but they sent always right. I’ve learned my gut is a good compass and paying out of pocket for a second opinion is always worth it. But I know you know this too now!! You are a good mom, you are doing right by your daughter. Good luck!!

  10. Hayley Nelson says:

    Hello! I would love the opportunity to talk with you further about this. My daughter is starting with the serial casting at age 3 and I’m just terrified and devastated and so scared of failure.

    • Jocie says:

      Hayley, I’m so sorry I’m just now seeing this comment! Please feel free to email me at jocie at oneprojectcloser dot com if you still want to talk!!!

  11. Stacy says:

    Thank you so much for this article! My 4 yr old daughter just finished with her casting for idiopathic toe walking and is now in braces. We were told that PT was all that she needed at first, then after we continued pushing, her doctor referred us to Gillette Children’s Clinic. The doctor there recommended the casting/braces. After reading your article, we were reassured that it was a good decision to move forward with! We live in MN and winter is quickly approaching. We had a difficult time finding shoes that would fit over the braces. Crocs are working the best for her now. Although a generic pair of Converse All Star type shoes from Walmart also work, she prefers the Crocs because they’re faster withouth the laces. But what to do when the snow starts?!? I’ve tried different pairs of boots on her and haven’t had any luck so far. She’s a Toddler size 9 normally. Has anyone else had luck finding winter boots to fit over AFOs?

    • San says:

      Hi my daughter is 2.5 years and has been a row walker since she started to walk. She is in cast these days although she had started to walk flat feet with casts on but I notice one of her foot she started to point outward which makes it hard for her to balance and walk all the time. The doctor said its very normal. Did you go through this? How’s your daughter doing now after the brace?

  12. Vanessa says:

    Thank you so much for this!! Your daughter is very lucky to have a patient mother like you. Your story is an inspiration to me. My daughter is 4 and a half and we will be getting casts for toe walking shortly. I feel like I failed my daughter as mother because I didn’t think the toe walking was an issue until the pediatrician mentioned it at her 4 year we’ll check. 4 months of physical therapy and it helped but not much. I wish you well and I’m hoping the braces worked for y’all. Fingers crossed that our journey goes as smoothly as yours has.

    • Jocie says:

      I understand that mom guilt. We have to put it aside, knowing we made the best choices with the information we had at the time, but its tough! 🙁 How are things going for you all now?

  13. tshenia says:

    I just had my first pt evaluation for my 5 year old and his toe walking. He was ruled out for a tethered spinal cord and we were told it is most likely a shortened Achilles tendon (was never confirmed) now pt is telling me he walks on his toes due to his hamstring. I really wonder after reading this if it is idiopathic to walking. When he is not reminded to walk heal toe he does not do it. I hope everything worked out for you and your daughter

  14. Leanne says:

    Thank you for sharing your story. My 7 year old son is in the process of going through pt and we are considering casting. I have been doing a ton of research on casting and toe walking, your blog has helped. I am wondering if you could tell me how everything has been working out now with the braces. Is she still wearing them? Has she retrained her brain to wal heel toe? I would also like some more info on cleaning his legs each week when they redo the casts. Any info would help. Thank you for your time.

    • Jamie says:

      My daughter is on week 3 of serial casting. She is 6 years old and is an idiopathic toe walker. She is on her toes 100% of the time! The PT who is casting her is fantastic and very pleased with my daughter’s progress. Heel cord lengthening surgery was recommended 2 years ago, but my gut feeling is not to do it. If anyone would like to talk about serial casting or toe walking further, I would love to hear from you.

  15. Allyson says:

    Thank you for sharing your story. I also have a toe walker. We tried braces and PT. Once we took the braces off, she eventually went back to toe walking. She is 7. They now want to try casting both feet for two weeks. I’m so unsure what to do at this point. I would love to hear how Izzie is doing now.

  16. Christine says:

    Can you tell me where you bought these braces/ TIA!

  17. Joanna says:

    What was the recipe for your salve you put on between casting?!

  18. Wendy says:

    Hi! I’m Wendy, a Pediatric PT with expertise in toe walking.

    What a great post, thank you so much for sharing your experience with the world. I am so sad you had to go through so much with your little ballerina.

    Jocie, could you please pass on my information to anyone that has questions or concerns? Even as a pediatric PT that has expertise in toe-walking, it is one of the most difficult issues to deal with in my work!

    I just wanted to mention a couple of things to help your readers even more.

    1. It is NOT NORMAL for a baby to WALK on their toes AT ALL. It is normal for them to STAND on their toes when they are first pulling to stand, but they should be down on flat feet before they even start cruising on furniture.

    2.Ask for a referral to PT as soon as you notice that your baby is cruising on their toes, or they’ve been pulling to stand for a month without being on flat feet the majority of the time.

    Don’t put yourself and your child through what Jocie had to go through!

    If you have any questions or concerns at all, you can ask me…most pediatricians think the “wait-and-see” approach is effective, but it just makes it so much harder for the child and parents if it doesn’t go away!!!

    Seeing a PT as soon as you notice it can help you fix it or prevent it from getting worse!

    Thanks for reading!

  19. Cynthia Hipolito says:

    Hi I would like to ask if you export an idiopathic braces here in Philippines like the picture above?

  20. Kimberly says:

    I know this is an old post but thanks so much for sharing. My 5 year old is just going into AFOs after 7 weeks of casting. I’d love to know how your daughter is doing now but the link doesn’t work! There’s limited information about what happens after our kiddos follow the protocol. I’d love some inspiration!

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