While we still have a ways to go before the ‘end’ of our story, we’re trying to share with you all along the way. We were clueless before this began (and do still have many questions, I’m sure), so I want to help other parents that may have a child who also walks on their toes. Today we’re onto Our Toe Walking Journey Part 3: Casting & Braces – the part that we’re in at the moment, and will be for several months to come!

In case you missed it, we shared the first steps of our journey (meeting doctors, discussing options) HERE, and then discussed the next step (MRI under anesthesia) HERE so be sure you go check those out. After the MRI came back clear, we were good to move forward with the original plan – casting and braces for his legs to both train his legs to be able to bend how they should, but also train him to walk ‘flat foot’ (that’s what we call it, easier for him to understand).

First step: Casting for Toe Walking

The reason we had to do casts on his legs were that he’d been walking on his toes so long, he’d actually allowed his muscles and tendons to grow/adjust to that angle. He wasn’t ABLE to make an ‘L’ (90 Degree Angle) with his leg and foot, even if he tried to force it or we tried to stretch it. Because of this, it was necessary to stretch out the muscles and ligaments so they would allow him the ability to walk how he should.

The solution was casting – we would take him in to physical therapy every week for several weeks to change his casts, each time stretching the angle of his leg/ankle/foot a bit further. Then the casts would hold that stretch constantly, 24 hours a day for the following week, making his legs adjust to that stretch. At the end of the week, we’d unwrap the crast (it was a wrap kind, not a cut off kind, since it was to be changed weekly) – wash his legs and feet really well, because boy those stunk! – then take him back in for new casts.

It was neat to see how much closer to a 90 degree angle he could get each week, showing that the casts were doing their job. Since the casts weren’t for an injury, he was still allowed to walk on them normally (as normally as a stiff ankle would allow, at least) with little booties to protect the bottoms of the casts. We still had to avoid getting the casts wet or allowing too much physical force (like jumping or kicking), of course, but ultimately they didn’t hinder his play too much. At night, he also had a knee brace (just one, and we’d rotate legs each night, taking turns) to hold his leg straight while he sleeps. This allowed for a little extra ‘stretch’ in the muscles while he was asleep.

We did casts about 5 weeks until one of his legs could go just a tiny bit past 90 degrees, and the other a little further than that. We’d reached out goal – YAY! Now we were ready for the braces. During the casting weeks, we went in (after taking one set of casts off but before our appointment to put new ones on) to orthopedics to have him sized for his braces. They put a cushion around his feet, ankle and legs where the braces would fit, then wrapped a layer of the casting material around for a good fit. The doctor made marks where any indents/bumps and such were, so it would be perfectly fitted and comfortable – even marking the arch of his foot perfectly. They put a tube thing in between the padding and hard material so when they cut it off, there was no possibility of cutting him – not even close.

They cut the castings off his legs, then sent those off to have his braces made. They had a whole book of designs he was allowed to choose from – and he was excited to pick Batman, with green straps, for his!

Shortly before we were done with the casts, we went in to ortho again to make sure the braces fit perfectly – and fixing any parts that may rub him the wrong way, to avoid sores and discomfort. We then had the braces ready for when the last casts came off, and he began wearing them immediately. We had to get TALL socks to wear under them – you don’t want the braces against his skin, since they are a hard plastic – then shoes a size-ish too big so they’d fit over the braces. His braces do have hingest at the back ankle, to allow a little movement, but they do restrict him to walking how he should – no more toe walking!

He has to wear the braces for 23 hours a day, every single day. Yes, that means he sleeps with them on (but not the shoes, obviously) and he does still rotate with the knee brace at night to help that extra stretching. He’ll meet with the doctor and his physical therapist again next month, so they can double check his progress and make sure he hasn’t lost any of the new flexibility the casting gave him and double check they’re still fitting him comfortably (because we all know how fast kids’ feet can grow!). He’s not restricted in what he can do (just whatever he’s comfortable with), though he is slower. He even lasted just great during our Walt Disney World trip, though we did need to get a Disability Access Service for him.

The overall plan is to wear the braces for 4 months for 23 hours each day, then we’ll very gradually taper off an hour a day for awhile. The goal we all set (doctors, physical therapist and us) was a total of 8 months in braces. It all depends on how his legs do, if he does well at walking ‘flat foot’ and not toe walking after he doesn’t have braces, and factors like that. But we’re optimistic and already love how much better he can walk!

What’s your experience with a child toe walking?

Check out the first part of our toe walking journey…

… or the second part of our toe walking journey…

If you have a toe walking child, you may be wondering what to do about it – or if you even should do anything! Maybe they’ll outgrow it, but sometimes they don’t – such as one of my boys. We’re back sharing more of Our Toe Walking Journey, as we’re doing what we can to get it fixed to prevent future issues with his legs, hips or more.

In case you missed the first part of our toe walking story, be sure to check it out HERE. We talked about what led us to finally seeking a doctor’s help, and how the first visits and decision went. Today, I’m sharing about what was the most terrifying part of this whole adventure so far – him going under anesthesia for an MRI!

Before making more steps for correcting his muscles and ligaments in his legs and feet, they had to rule out other possible issues that could be causing and/or affecting them. As a twin, the chances of him having scarring on his brain were higher, and he also has a sacral dimple (meaning there was a possibility of an abnormality with his spine or spinal cord). To check for both of those, an MRI was required – and since the brain and spine take awhile, it would be about 90 minutes in the machine. Not many kids can sit still that long, much less hold COMPLETELY still in a big machine, so we decided anesthesia was the best option.

We had to be careful of a few things before the MRI, such as making sure he wasn’t sick (cold, flu, etc.) because that can increase the chances of side effects or risk. The night before, he had to stop eating solids about 8pm. He then could only have liquids (like water or apple juice) until around 7am the morning of.

We took him in a few hours before his scheduled time (as instructed) so they could get him all checked in, all the paperwork and questions completed, get him in a gown and take his vitals. We had the few hours just chilling in our room, letting him play on a tablet to help him stay calm, occasionally having a nurse or doctor come talk to us and answer any questions. They asked multiple times about metal – because remember, an MRI machine is like a big magnet!

I admit – I WAS A MESS! I was so nervous, hardly sleeping the night before. I was trying to play it cool, since Thor wasn’t really nervous at all and I didn’t want to cause him any unnecessary worry or stress. I know the risk is minimal, but it’s still there and I’d never had a child have to go through something like this before. I did my best to stay calm and act normal, but was on the verge of tears all morning.

The anesthesiologist came in shortly before to explain exactly what would happen, probably knowing that this momma would be worried. I loved that she also spoke to Thor, so he’d understand and nothing was a surprise. They also allowed him to bring a stuffed animal, that they would sit in the window by the doctor/nurse to ‘watch over him’ while he was out.

Basically, they take him back there and get him comfy (they showed him the MRI machine through the window). They give him one of those ‘fun’ kid masks to go over his nose, calming him and putting him out with the gas. They didn’t do the IV until he was out, knowing that that’s the worst part for many children. Once all settled, they did the MRI, with Thor sleeping comfortably and his vitals being monitored every moment.

We went and got lunch at the food court during this time, and yes I’m a nervous eater so hubby teased me quite a bit as I piled random foods on my tray. We made it back quickly (I was nervous that we wouldn’t be back in time for him to wake up) and sat around quite a while. Once he was done, they watching with him until he started to come out of it enough to remove the mask and such.

They then brought him back to the room and got him comfy on the bed. It still took a bit for him to wake up, and even then it was just a little, then back to rest a bit. When mostly awake, they removed the IV and heart/oxygen monitors. We weren’t rushed or anything, so let him wake up slowly and on his own time. Once awake, he was a little tired for a while still, but not badly. They let him drink some juice and soda, and gave him crackers to ease his stomach.

Within about an hour of leaving the hospital, he was right back to his normal self (and definitely ready to eat more)! I was so relieved it was over and went safely, and appreciated that the staff was so patient with me. I’m sure they’re use to nervous parents!

A week later we got the results of the MRI (the doctor looks over it after getting it from the MRI department) and Thor didn’t have any scarring on the brain OR issues with his spine, so we were cleared to move forward with our plan to correct his toe walking. What a huge relief that was for us! We scheduled our next appointment to move forward with the casting and braces – which I’ll be sharing soon.

For the Rest of our Adventure…

Check out the first post in this story…

…or the most current part here…

I’ve gone back and forth sharing this adventure with y’all – it’s pretty personal – but ultimately decided that this is Busy Mom’s Helper, meaning we HELP each other through this whole parenting thing. If any of you have children who are toe walkers and aren’t sure what to do, maybe our story will give you some guidance. Today I’m sharing Our Toe Walking Journey, from when we decided it was a problem, to now being smack in the middle of getting things corrected.

First of all, a lot of little kids walk on their toes – it’s just that most outgrow it. When one of my boys, Thor, was getting older but STILL walking on his toes (constantly, not just every now and then), we kept wondering if it was a problem. So many people kept telling us ‘oh, he’ll grow out of it, don’t worry’ and we listened – for too long. You see, we let it get to the point that his muscles, tendons and ligaments were trained and grew to facilitate his toe walking – meaning he COULD NOT walk flat foot, or heel first. He couldn’t even make an ‘L’ (90 degree angle) because he’d walked on his toes constantly for so long! When we finally realized this, around when he turned 8, we decided that we had to look into it more – and I’m so glad we did!

You may be thinking ‘why is toe walking a problem’? Walking like that for too long, especially as they hit puberty or adulthood, can actually really mess with not only their legs and feet, but also their hips and spine. It can cause life-long problems, so it’s important to get it taken care of. Please remember that I’m NOT a doctor, and you should always seek the counsel of licensed medical professionals when making decisions like these.

Side note – Thor does have SPD (Sensory Processing Disorder), so things like bouncing are a type of physical input that he really likes and – in a way – needs. That’s one reason we believe he kept walking on his toes, so he could get the sensory input just by walking. It’s important to understand reasons WHY your child may be toe walking longer than most, so just something to keep in mind.

Our pediatrician referred us to the specialists at Texas Scottish Rite Hospital for Children, and they set up an appointment for us shortly after. At Thor’s first visit, they did measurements (seeing how far his feet could bend, the angles, etc.) and even did videos of him walking so they could accurately track everything. They then scheduled us an appointment with the neurology department, and their doctor who specializes in toe walking problems. She was fantastic, and very informative. We actually learned that there COULD be underlying problems also contributing to the toe walking, and we needed to rule those out before any treatment. If we treated the wrong way or for the wrong thing, it wouldn’t help in the long run. Since Thor is a twin, he had a higher chance of having scarring on his brain, which could be a problem, and also he has a sacral dimple. About 3-8% of the population have a sacral dimple (a small, shallow indentation in the small of the back, just above their bottom), and a small percentage of THOSE could mean spinal abnormalities.

To rule that and the brain scarring out, we had to schedule an MRI – and because they were looking at two major things (spine and brain), it would be 90 minutes. Not many 8 year olds can lay completely still for that long, especially in a large machine (even though they decorated it like a spaceship to help the kiddos), so he would have to be put under anesthesia. Needless to say, this momma was TERRIFIED! There’s always risks when doing anesthesia, especially for kids – but we knew there wasn’t another way to get this figured out. We scheduled his MRI (it can have a decent wait, since it’s not a super rushed issue) for a couple of months later.

Follow the links below for the rest of our adventure…

Part 2 – The MRI and Anesthesia 

Part 3: Casting and Leg Braces