FAQ about tip-toe walking

I started writing about my daughter Lydia’s tip toe walking when she was three years old. Since then I’ve written updates on the processes she’s been through: physical therapy, AFO braces and serial casting. I thought it might be time to compile all of my posts into one FAQ type of post. I receive many emails from concerns parents about their child’s tip toe walking and I still encourage anyone with questions to contact me. I am not an expert, not at all. I can just speak about my daughter’s experiences.

Q. When did your daughter start walking on her tip toes?
A. Lydia walked on her tip toes right around the time she began walking. She didn’t walk exclusively on her tip toes all the time, just from time to time. But, as she got older, she began walking on her toes all the time. A typical walking gait is heel-to-toe. Lydia walks on her toes, so the pads of her toes hit the ground first. She can and always has been able to walk heel-to-toe when prompted, but only when prompted. Her natural stance is to be up on her toes. If she tries hard to walk on her flat feet, she is indeed walking on her flat feet. It’s not heel-to-toe stance, it’s completely flat-footed. We thought the toe walking was cute at first and just something that she’d grow out of. She never grew out of it and in fact walked higher and higher up on her toes as time went on. A person who walks on their tip toes all the time ends up shortening their leg tendons, essentially making it impossible to walk correctly in a heel-to-toe way because the muscles aren’t wired to walk that way anymore. Lydia has very tight leg tendons because of her toe walking. When we first asked her doctor about it at her three-year check up, he sent us to a physical therapist.

Q. What is the first thing you did?
A. Lydia received physical therapy two times a week for her toe walking. The therapy consisted of stretching her muscles with various exercises. We were given exercises to do at home. They didn’t seem to make much of a difference. Because of the toe walking, Lydia has amazing core strength. It takes muscles and strength to hold yourself up on your toes all the time. I have tried to walk how she does and I just can’t do it. My calves ache and I can’t keep it up. Lydia is a strong girl. During her physical therapy, we worked her muscles and tried to re-train them, but no progress was being made. The physical therapist suggested Lydia wear corrective AFO (ankle-foot-orthodic) braces. Read this post here about her braces for toe walking. The physical therapist also tried using squeaky shoes with Lydia. The shoes were super cute – they had little squeakers in the heels, so Lydia had to walk correctly heel-to-toe to make them squeak. Those weren’t effective. While cute, they didn’t work. She’d never get the things to squeak.

Q. What other therapies did you try for the toe walking?
A. After the squeaky shoes, the physical therapist suggested serial casting for Lydia. You can read my thoughts about that in this post. We felt that option was severe and didn’t want to do it. Instead Lydia wore AFO braces at night. You can see pictures of the casting for the braces here. And some pictures of her wearing the braces here. The night braces didn’t work.We were able to stretch the braces correctly {the braces had velcro straps that allowed you to angle her feet up higher and higher as time progressed. We were able to make progress on increasing her angle over the course of her wearing the braces.} but, Lydia would wear her braces and would do a great job keeping them on without complaint, but as soon as they’d come off in the morning, she’d be right up on her tip toes.

After about six weeks of the night brace treatment, the physical therapist suggested day braces. As you can read about here, I wasn’t too keen on that idea, but I knew something needed to be done. This post here has pictures of her day braces. I was so nervous for her to wear the braces to preschool, but no one ever said anything about them. She wore them like a champ. They slowed her down a bit, but only a little bit. Basically the braces themselves didn’t slow her down; it was the bigger shoes that slowed her down. She had to wear shoes that fit over the braces, so her shoes were 3 sizes too big.

Lydia didn’t wear braces 24-7. She wore the day braces about 8 hours a day, had about a 2 or 3 hour break, then wore her night braces. As soon as she was out of the braces, she’d be right back up on her tip toes.

She was having physical therapy weekly up until this point but then stopped for about three months. Lydia wore her day and night braces. That summer, which was almost two and a half years after we began physical therapy, we decided to do serial casting. We were initially skeptical of this option because it seemed severe. During Lydia’s four week serial casting, both of her legs were put into casts. The casts prevented her from moving her ankles and feet at all. The casting weakened her calf muscles and tendons, therefore weakened her ability to walk up on her tip toes. I wrote and took pictures during the process:  week one, week two, (and week twoweek three and week four. Each week the angle of her foot was raised so that her tendon was able to stretch the correct way, to enable heel-to-toe walking. The serial casting worked WONDERS. Lydia could not walk up on her tip toes after it was completed.

Lydia then got new, bigger day braces because she had grown out of her old ones. Here’s some pictures of her in those braces.  She didn’t wear the braces to school because she was in kindergarten at that time, only for half a day. She wore the braces when she got home and for the rest of the day.

Fast forward six months.

We saw an orthopedic doctor about Lydia’s progress. The doctor was pleased that Lydia’s tendon and muscles were able to be stretched out with the casting and the braces. However, she told us something very important, something that changed our opinions completely about this whole process. You see, Lydia’s tip-toe walking never bothered her. It only bothered us occasionally because honestly we just didn’t want her to be walking differently. But her tip toe walking never ever hindered her behavior. She ran on her tip toes. She has a twin sister (who works with a typical heel-to-toe gait) and Lydia always has been able to keep up with her sister. That doctor told us that some kids are tip toe walkers. They just are. And as long as Lydia’s toe walking isn’t bothering her, then to just let it be. We were relieved to hear this. And honestly, all along we felt that way. We were willing to do what we needed to do to try to help Lydia along, but we always had the stance that it was just something she did, and that was okay. The doctor told us not to over-medicalize the issue. We were told it was okay to just let it be. And that’s what we did. No more braces, no more physical therapy. We knew that Lydia would eventually regain muscle strength and be up on her tip toes fully again. We were okay with that.

Q. Did you ever suspect a developmental delay because of the toe walking? 
A. One of the first questions we asked was if something more was wrong with Lydia, because sometimes tip-toe walking is related to sensory issues. Lydia does not have sensory issues nor any type of developmental delay. She has fine muscle structure and tone. She just walks on her tip toes.

Q, If you were to do it all again, would you do serial casting first?
A. Yes, we would do serial casting earlier. If we were to have done serial casting when Lydia was three years old, at the start of her therapies, we wonder if that would have made a bigger difference. We’re not sure if it would have or not, but we are curious about that. Serial casting sounded so harsh and severe. But it was not. It was fine. Lydia did fine with the casts. She actually enjoyed all of the attention. We did the serial casting during the summer, which was an ideal time to do it because Lydia didn’t have to wear the casts to school. We did take her out on outings while wearing the casts. People just assumed she broke both of her legs. (yowee!) We explained to some that she was getting therapy for toe walking, hence the braces, but to others we just let them think that. Lydia would tire out when we’d go to the grocery store because the casts were heavy. But, she was able to walk and do activities as normal.

Q. How is Lydia doing now? 
A. Lydia is now seven. She’s up on her toes as high as she used to be. We’re still letting it be. Occasionally we will correct her. For example, when we are both standing and I’m doing her hair for school, I notice she is wobbling slightly. So I ask her to stand on her flat feet. She does. She lowers a couple inches and is still. No one has made fun of Lydia for her toe walking. We were always so fearful of that. But so far, no one has poked fun. The difference from three-year old tip toe walker Lydia and seven year old tip toe walker Lydia is that seven year old Lydia is fully aware of being a tip toe walker. She isn’t chastised for it, we don’t ever yell at her for doing it or tell her it’s wrong or she’s bad … but she’s aware that it’s not normal walking.

I wrote about Lydia’s progress here in blog post last year. In that post I explained that we’re still letting it be. I also asked Lydia then if I could take photos of her tip toe walking to put on my blog. She was hesitant about it but said okay. I told her there are other kids that walk on their toes and their mommies and daddies write me emails after reading my blog about her experiences. She was happy to hear that other kids were toe walkers, because we have never come across another kid that walks like Lydia does.

Last night when I told Lydia I was going to write a blog post about tip toe walking she asked why and I told her I was writing about an update. She asked if some parents still ask me questions. I said yes. She was okay with it. I asked her if I could take a pic of her feet and she said no. I was okay with that. Instead she wanted me to take pictures of her with her new pom poms. Ok then, will do.

I don’t think that Lydia is embarrassed by her toe walking. I think, rather, she’s just aware of it. As she gets older, she’ll either just stop, or, she can ask us to help her. If she gets to the point where she wants to stop, but can’t on her own, then we can pursue physical therapy, braces or serial casting again. Because Lydia is older, and much stronger and more developed, it will take some doing on her part to walk heel to toe. She will have to work harder at not walking on her toes. But all of this is up to Lydia, not us. As the orthopedic doctor told us, some people are just toe walkers. If Lydia is a toe walker her whole life, that’s perfectly ok. Lydia is Lydia and we love Lydia no matter what.

So, that’s where we are. My overall advice? Parents, trust your instinct, and don’t try too hard to fix it. There are things out there that work, but this is a long road, regardless. I don’t believe there is a quick fix. The therapies essentially “fixed” Lydia’s walking for about six months, but she’s back up on her tip toes now. And that’s not necessarily wrong or bad. It just is. We’ve been at it four years and will have to address it again when Lydia asks us about it. We sometimes wish we would have been more aggressive with therapies and treatments when Lydia was three, but we don’t know if that approach would have worked or not. Time will tell what will happen and if we try a new therapy I will update this post.

As I said at the top of this post, I get a lot of inquiries about toe walking. I still welcome those questions. I’m not an expert but I am more than willing to share our experience.

Feel free to leave a comment below. If you’d like to email me directly, my address is: twostartwins@gmail.com

Letting it be: toe walking

***If you’ve landed on my blog from searching the ‘net for info on tip toe walking or serial casting or AFO braces, hello. This particular post here is one in a number I wrote about my daughter’s tip toe walking. I encourage you to start with this post instead. It encapsulates our journey more succinctly.***

I’ve written a lot on this blog about my daughter Lydia’s tip-toe walking. It’s been a process, from when she began physical therapy for it almost three years ago, to when she underwent serial casting this summer, to now. {For a history, if you’ve stumbled upon my blog because you’re interested in learning about toe-walking, braces or serial casting, click here to see all of my posts on this subject.}

Look at this picture – this is from February of 08:
She’s high up on her little piggly wiggly toes. That’show she stood and walked, all the time.
And this is Lydia today:
Heels are on the ground.  And that is significant. She never used to be able to stand flat footed. She would stand as she’s pictured in the first picture – teetle-totting on her tipppy tip toes.
We’ve seen two professionals during Lydia’s tip-toe walking progression, a physical therapist and an orthopedic doctor. Before she went through serial casting this summer, Lydia saw the orthopedic doctor. The doctor recommended the casting and we were told to return in six months. Lydia had the serial casting and she made huge gains. She was still walking slightly on her tip toes, but it was much, much improved. She wore braces at night and during the day after school. She has always been a trooper and was doing just fantastic with all of it.
The six month checkup with the orthopedic doctor was at the end of October. The doctor was pleased with Lydia’s progress with the casting. She recommended that Lydia not wear the day-time braces anymore and to discontinue seeing the physical therapist. Her whole stance was that she didn’t want to “over-medicalize” the issue. And we totally agree. She said that some kids are just toe walkers, and some kids will always do it, no matter what. She thinks braces are a good idea, but for Lydia, they weren’t really helping much. Lydia doesn’t have anything mentally wrong with her to cause the toe-walking, it’s just how she is, it’s just how she walks.  She said the serial casting is what Lydia needed at the time that she got it, because it tricked her legs and feet into walking correctly, but no matter how much physical therapy she receives in the future or how long she wears her braces, it is just her body’s natural way to walk tip-toed. The doc recommended that she still wear the night braces as an extra support to help trick her feet, but other than that, just to let Lydia be Lydia.  Again, we totally agreed!  So, no more physical therapy, no more day braces! 
And you know what – she’s doing fine.  We will occasionally notice her up on her tip toes, but it happens when we’re at home and Lydia is either really relaxed, really excited, or really tired. For the most part we just don’t pay attention and we don’t look for it. In the past we had corrected her when we noticed her on her tip toes, we’d say, “get down off your toes” and she’d then go down on her heels (but then be right back up on her tip toes a few seconds later!) She is able to walk heel-to-toe now (she never could do that before, pre-serial casting) and she does that 96% of the time. The doctor told us that the worse that could happen is that Lydia could regress to getting higher and higher up on her toes (like she was before) and that could happen in one, two or three years time, no one knows for sure. At that time we can decide, with Lydia’s input, to do the serial casting again, or just to let it be. The doctor said that as Lydia grows up it will be harder and harder for her to walk on her toes because she’ll be heavier. She could also just grow out of it at any point.
We did so much worrying about the tip-toe walking and we paid attention to it all the time and now, we just don’t. It was a relief when the doctor told us to just let it be. I think we would have gotten to that point on our own in a matter of time, but hearing it made such good sense. Lydia’s tip-toe walking has never caused a problem for her, developmentally. She ran on her tip toes, she skipped on her tip toes. It never affected her daily life.  Wearing the big heavy braces (she had to wear shoes that were three sizes too big to accommodate the braces) did affect her life. They slowed her down a little. They made her tired because they were heavy. They tripped her up.  It wasn’t anything severe, but it did affect her. We’re very, very glad that she won’t be wearing them anymore, and she is as well.
So, Lydia is Lydia and if she walks more and more on her tip toes, that’s okay. We’re letting it be.

Lydia’s new braces

***If you’ve landed on my blog from searching the ‘net for info on tip toe walking or serial casting or AFO braces, hello. This particular post here is one in a number I wrote about my daughter’s tip toe walking. I encourage you to start with this post instead. It encapsulates our journey more succinctly.***

Lydia got her new braces Friday. They are quite cute!  Here’s a few pictures – she was very happy to pose with them! 

Notice the Vanna White hands here!  Haha!

The braces are actually longer and wider than her foot, so she had to get shoes that are two sizes bigger. She had to get used to walking in the bigger shoes. She has an indoor pair of shoes and an outdoor pair of shoes (we found a great sale!) because she can’t wear the braces without shoes.
Teehee!  This cracks me up! I have no idea what she was doing.
Lydia has been doing EXCELLENT since her serial casting for her tip-toe walking ended. {Here’s the back story on her serial casting.} Ever since her casting sessions were over (which was about four weeks ago) she has been doing so good. She very occasionally walks up on her tip toes but after we notice and say something she stops. She’s so so so much better about it than before.  However, because there is the danger that she might slowly start to walk back up on her tip toes more regularly, she needs to wear braces. The braces will help to re-train her muscles even more and will get her used to walking heel-to-toe as just second nature. She will wear the braces for a minimum of six months most of the day (she won’t wear them to school) and she has night braces too. Our physical therapist would like for her to wear the braces to school too, but we feel strongly about not making her do that. Kindergarten is only half day so it’s only a couple hours. I wouldn’t want the kids to make fun of her for wearing them because that would upset her. She’s very willing to go along with all of this so we don’t want to rock the boat. Basically she’ll be in braces all but four hours of 24 hours, and we think that’s pretty good!

Serial casting, complete!

***If you’ve landed on my blog from searching the ‘net for info on tip toe walking or serial casting or AFO braces, hello. This particular post here is one in a number I wrote about my daughter’s tip toe walking. I encourage you to start with this post instead. It encapsulates our journey more succinctly.***

Lydia has completed her serial casting for her tip-toe walking, and she’s done FANTASTIC!  Absolutely fantastic!  She has gained 20 degrees of motion in both feet, which was exactly the goal.  Hooooray for Lydia! 

At her physical therapy appointment this week she was fit for orthopedic braces. She’ll have night braces and daytime braces. They will arrive in about three weeks.  In the meantime, she has removable casts:
The black “shoes” are her walking shoes that she’s had throughout the casting process. I realized as I was uploading these photos that this is the first time I’ve photographed them.
She wears these casts for three hours before bed and then all night.  They are just like her previous casts, except they are cut up and split apart on both sides, so she can take them on and off and strap them together with velcro. The numbers on the straps tell her the order to strap them together. These casts just help her to maintain the range of motion that she gained.
When she’s out of the casts, she’s NOT walking on her tip toes!  I can’t even express to you how thrilled we are about that!  She’s walking completely flat-footed, which isn’t exactly how she’s supposed to be walking, but flat-footed is the first step to learning how to walk in a normal heel-to-toe gait.  If she gets tired she looks like a shuffling old man, which is pretty cute, to be honest.  She starts regular physical therapy in a few weeks when she gets her braces.
She’s done so well throughout this whole process!  We could not be happier!
AND the best news?  Now she gets to SWIM when we’re on vacation next week!  YAAAAAYYYY!

Mixing it up a bit this week

***If you’ve landed on my blog from searching the ‘net for info on tip toe walking or serial casting or AFO braces, hello. This particular post here is one in a number I wrote about my daughter’s tip toe walking. I encourage you to start with this post instead. It encapsulates our journey more succinctly.***

Lydia got her week three casts put on today – and she mixed it up a bit!  Orange with smiley faces and purple with flowers!  So stylish!

The BEST news?!  I was fretting for nothing! She has gained a total of 12 degrees of motion in both legs!!  The first week, she gained five degrees of motion, and the second, seven!  I was so worried that she wouldn’t gain anything this past week, but she gained more than the first week.  Amazing!  The physical therapist said even though it might have appeared that Lydia was walking on her tip toes, she really wasn’t. Her foot was stabilized within the casts. That’s good news!  Just to be safe this week though, the casts are long, covering up her toes.
Next week Lydia’s legs will be molded for day braces and night splints, the same type that she wore two years ago. She will need to wear the braces so that she doesn’t lose the motion range that she has gained, and will have continual physical therapy to strengthen up her muscles. She will wear casts next week too. I wonder what color she’ll choose?

We’ve still got a ways to go, but we’re very pleased with this process so far!  And proud of our brave girl, as always!

Week two down, one or two more to go!

***If you’ve landed on my blog from searching the ‘net for info on tip toe walking or serial casting or AFO braces, hello. This particular post here is one in a number I wrote about my daughter’s tip toe walking. I encourage you to start with this post instead. It encapsulates our journey more succinctly.***

Lydia got her week two casts taken off this evening in preparation for getting casted again tomorrow morning. (Here’s a recap of the casting process she is going through for her tip-toe walking.) 

Look at the happy girl – first with casts, second with casts off.
Throughout this whole process, Lydia has been nothing but happy. She’s had an EXCELLENT attitude! 
I must say, though, through no fault of hers, this second week of casts was a bit discouraging. We had a different physical therapist put the casts on last week, because the regular gal was on vacation. The casts were different from week one to week two.
Last week, with the pink casts, Lydia was walking only slightly up on her tip toes while in them. The casts kept her feet at 90 degree angles, but they prevented her from using her calf muscles to get up on her tip toes all the way. When we took her casts off, Lydia tried to walk up on her tip toes, but physically could not do it. It was very difficult for her to walk her first couple of steps once out of the casts because she could not walk up on her tip toes. And when she was measured, she had gained five degrees of motion in both legs, which was the goal, yay! 
Well, this week while in the green casts, she was able to walk on her tip toes all the time, constantly, because her toes were sticking out and she was able to get traction. Her toes are also very strong, because they’ve been aiding in her toe walking this whole time. She was also able to use her calf muscles this past week while in the casts. When I took her casts off tonight, she got out of them, and ran, up on her tip toes, down the hall. It was so different from the past week. She had trouble walking last time, and this time she didn’t.
I do not blame her at all with any of this, she is just used to walking on her tip toes, and she was just doing what was normal to her this entire past week, even while in the casts. I am really worried that this last week was a waste though. I know that Lydia couldn’t bend her foot inside of the casts, which hopefully helped, but I’m not sure if she was able to gain any more range of motion because she was able to get on her tip toes.
We’ll see tomorrow when she gets measured. Right now we’re expecting her to be in the casts for just one more week. She might have to be in them an additional week … it all depends on how much motion she gains at the end of next week’s casting session.  We’ll see!  Hopefully my worries will be put to rest at tomorrow’s appointment.

This week, green!

***If you’ve landed on my blog from searching the ‘net for info on tip toe walking or serial casting or AFO braces, hello. This particular post here is one in a number I wrote about my daughter’s tip toe walking. I encourage you to start with this post instead. It encapsulates our journey more succinctly.***

Week two of the serial casting for Lydia!  (Don’t know what this is about?  History here.)  We took Lydia’s casts off Monday night and they were pretty easy to remove, just lots of unwrapping.  It was really odd watching her trying to walk for the first time. She tried to get right up on her tip toes and couldn’t, because her calf muscle had been weakened by being in the cast for a week. She told me that it felt like the ground was too far away and she felt like she was stepping down too far. Which makes sense considering that when she does walk on her tip toes, she’s higher by about four inches. So she was stepping down farther (in her mind) by not going onto her toes. She walked completely flat-footed for awhile but then seemed to get the hang of it. She wasn’t walking completely heel-to-toe, but she was trying really hard. Today, she was slightly on her tip-toes while she was walking, but not as high on her toes as she was previous to the casting.

We went in today to get week’s two casts put on. The physical therapist said that Lydia had gained five degrees of motion in both ankles, which is the goal. Yay!  She got green casts put on today, and I took some pics!  She chose green because I told her that when I had broken my foot years ago, I had a green cast.
This week’s casts don’t seem to be as bulky as last week’s for some reason. We had a different therapist this week, so that could be the difference. 
I’m pleased with this whole process and surprised by it all, really. We were offered serial casting for Lydia last year but didn’t want to do it because it seemed to be an extreme. But it’s really not been a big deal at all.  Lydia has surprised us all with this … she’s just trucking on like nothing’s on her legs at all. She gets around just fine and with the exception of just one tiny complaint last week about them itching and hurting, has been doing excellent. Because she did gain the five degrees of motion then we know that it is working, which is awesome. We’re doing the things we normally do, like go for ice cream, go to the library, the movie store and shopping.  Lydia goes along with us with no problem.  Such a trooper!
She got green toe nail polish tonight – it’s kind of an ewwy color of green right up against the green of the casts, but she loves it so that’s all that matters!