We never noticed our youngest son’s toe walking on our own so being able to pinpoint when it started is very hard. When he was 2-years-old, he was running around our backyard when my Aunt pointed out that he stays up on his toes a lot. After that, it was all I could see. We made an appointment with his pediatrician who recommended physical therapy. By the time our appointment rolled around, our son was 3-years-old.
I hope that your experience with physical therapy was/is better than mine. I absolutely cannot recommend this based on our experience. We spent thousands of dollars on what ended up being nothing more than a waste of time at best. We had one appointment every week. We did the exercises that were recommended. However, if there was even a little slacking off (and who isn’t going to have a week here or there where life interferes), then whatever gains we made from the physical therapy at that point were gone. It was like we hadn’t done anything at all. At this point, my son was no longer able to stand flat footed at all. At best, if he splayed his feet apart in a wide stance he could rest on his heels.
The therapist recommended expensive treatments that did nothing. Then she griped at us when we did not do more. We did the boot inserts which have an official name that escapes me now. Basically, it’s a plastic cast that comes up to mid-calf that you wear with socks and shoes. Our three year old was beyond thrilled at wearing those. We bought anything she recommended because she was constantly threatening us with the boogeyman of surgery. I can’t imagine any parent wants to put their toddler through surgery so we were constantly grasping at whatever straws that came our way. When she recommended that we see a sensory therapist even though in my heart I knew it wasn’t a sensory issue, we did that too. Turns out? It wasn’t a sensory issue which left us back with the first physical therapist.
I hit my limit after a year and a half with absolutely no improvement. I am a stay at home mom which worked out because otherwise the sheer amount of appointments would never have been feasible. But we were now in debt which was something we had worked very hard to NOT be in before I left work. We had no choice but to consider the nuclear option. Our son wasn’t improving. He was starting to fight the physical therapy appointments. I hated dealing with the therapist. I’m pretty sure she hated dealing with us. We went back to our pediatrician to be referred to a Pediatric Orthopedic (PO) Surgeon. My son was 4-years-old at this point.
The appointment with the Pediatric Orthopedist (PO) was eye-opening. He pointed out that the reason our son could not stand flat-footed was due to a shortened achilles tendon that was not growing with the rest of him. He suggested that we stop physical therapy since it was never going to have an effect (gee… how odd that the physical therapist NEVER suggested that… file this under I am still very bitter). He wanted us to wait a year as it was possible (slim) that he could grow out of it but also they don’t typically perform the surgery until the child was 5-years-old. He wanted to see our son in one year to access where his progress was and what the next step would be. I called the therapist and told her that her services were no longer necessary. I think that one phone call is a close second to the happiest moment I had during this whole process.
My son had no improvement in his toe walking for a year. By now, he was 5-years-old. We went to the appointment in August with the PO who made the recommendation of surgery. He explained that he would be making three incisions on each ankle where he would cut the tendon. They would then put casts on his legs to lock his feet in place so that the tendons would grow back correctly. He would be in casts for 6 weeks. After that, the casts would be removed and our son should be off on his own. The surgery itself was outpatient so he would not have an overnight stay at a hospital. I know that there is a version of this surgery that is more invasive and does require a hospital stay.
We knew it was coming but it was still heartbreaking to hear. We left the appointment and spent several months going back and forth over what to do. No parent wants to put their child through surgery even if it is necessary. We debated on if we should do it. We debated if this was even a real issue. Some family members were supportive and some felt we just needed to try harder with the foot exercises. We went back and forth on scheduling it. We set a hard deadline on making the decision because otherwise we would probably still be talking about it. I made the call in October and we scheduled the surgery for just before Christmas break. Our school has a two-week break for Christmas which was just the right amount of recovery time for our son after his surgery.
Side note #1: This is what worked for our family. We were worried about our son being in casts through the summer due to how nasty we thought his casts would get from the heat and sweat. We were also worried about his missing out on family activities that we do during the summer. My son was in kindergarten at this point so missing out on some school was not that big of a deal. He needed most of that two week break to be able to learn how to walk on his casts. We also had a week on the post-casts side that we were not prepared for where he missed school (more on that later). If your child is older, I would recommend that you consult with your school’s teacher about their attendance policy before scheduling the surgery.
I was in dread for the next two months as the date approached. I just did not want to do this to my kid. We followed the Internet’s advice and waited to talk to our son about the surgery until about two weeks before the surgery date. We wanted him to understand what would happen without stressing him out over it. We bought some books to help explain the process of going to a hospital and read them to him several times during this period. The night before the surgery, we took our son out for his favorite dinner and bought him a new stuffed animal to take to the surgery center with him in the morning. I’m going to call it what it was – parental guilt. Your mileage may vary here as to how you go about prepping your kid for the surgery. This worked for us. He was excited about the new stuffed animal and wasn’t stressed about going to the surgery center at all.
His surgery was scheduled for 7:30 AM so we had to be there an hour before. The nurses all came by to introduce themselves to our son. He was changed into a hospital gown. If you have a concern about the IV (which we did – I HATE IVs), the surgery center we were in did not put the IV in until after he was asleep. We spoke with the anesthesiologist prior to the surgery and he explained his process to us. The PO stopped by to reassure us that it was a routine surgery. Our son picked the color of his cast bandages and then they wheeled him off. We waited in the lobby with other family for about an hour.
The post-surgery step was awful. I have spoken to some other parents of young children and I don’t think this was an unique to our family experience. I’m going to say it again, it was awful. They brought us back to wait for him to be wheeled out and we heard his howls before we actually saw him. He was crying so hard that he was having a hard time breathing. We tried to comfort him but nothing was working. When he wasn’t sobbing, he was begging us to take his casts off. We were in post-surgery recovery for about 30 minutes before we left. He cried the entire time. You could see the different moments when he would start to register the people he knew that were around him. The nurse gave us cast shoes (very important, don’t leave without them) and we were out the door. Our son calmed down about halfway home but you could tell he was still miserable.
The surgery was on a Thursday, our son started walking on his own again on the following Thursday. For the first three days, our son could not put any pressure on his legs without crying in pain. Getting him to the bathroom was a two person job, one to carry and lift him up and down, the other to handle his clothes and wipe. We put mattress rails on his bed to ensure that he would not roll off while wearing his casts. We had these in our garage still from when he was younger. It’s a safety precaution we put in place because they were there not that it was recommended. The rest of the time, he was put on the couch where he had free reign over the remote.
It was Sunday (day 4) before he started crawling around the living room. On Monday (day 5), he started being able to put pressure on his feet again for short periods of time. After that, we were able to assist him walking back and forth to different places within our home. On Thursday (day 8), our son began walking around the house on his own. He was still not unassisted but he would use the furniture to cruise around. He would take occasional awkward steps on his own for short distances. It was the second Sunday (day 11), that I had any hope that he would be able to go back to school at the end of the break as he finally began walking unassisted.
Side note #2: We bought some cheap sweatpants and athletic pants with zippers at the ankles as it was easier to dress him with those than his normal blue jeans while he had his casts on. It was also recommended to us that we find some other shoes (specifically Crocs) than the cast shoes for him to use but we had no luck with that. Our son’s feet are naturally wide and with the added width of the casts, there was absolutely nothing that would fit. We ended up using the cast shoes the entire time. By the end, they were incredibly beat up looking. We had to reinforce the velcro that attaches the strap at least twice. We also purchased some socks with rubber on the bottom so he could move around our kitchen and bathroom without slipping. These were helpful initially as he learned to walk with his casts on but then we didn’t use them again after that.
Side note #3: We did not spend any money on special bags for our son’s casts to use in the shower. We also did not try the plastic bag trick. It was all sponge baths for the entirety of his wearing the casts. That was our choice because we did not want to risk getting his casts wet. Our son also had a stomach virus during this period of time where he threw up all over his casts. We cleaned him up the best we could and called the nurse who said it was fine. We bought moleskin to place on the sharp edges of his cast when they started to wear down. We also used dryer sheets on the outside of the casts to help with smell.
Our son was incredibly shy about the first day of school with his casts on. He was embarrassed about people seeing them. His teacher spent some time with his class to explain about his surgery and why he was wearing casts. After that, it was essentially a non-issue. We would occasionally get people pointing or saying things but this flew over our son’s head. We would answer polite questions and ignore everything else.
We had a post-op appointment about 8 days after for the PO to look at the casts. We had a second appointment with the PO at 4 weeks who was so pleased with our son’s progress that he recommended the casts come off at 5 1/2 weeks instead of the full 6 weeks. Ok, sure… sign me up please! We had a scheduling snafu due to availability and originally scheduled the cast removal appointment for 5 weeks. We had to correct that to get the right date. But there for a moment it was looking so close.
Here is the portion of the story where the Internet failed us. This whole time we were able to find at least some information to walk us through what we were doing. We arrived at the appointment on Thursday afternoon for removing the casts. Our son was declared ready, and they took us to the cast removal room. This was the very first time anyone mentioned to us that there would be any kind of issue with our son being able to walk without the casts. He should be fine “in a couple of days”. That was a big old can of nope.
The nurse removed his casts. He giggled the whole time because it tickled. His little legs looked abnormally slim from muscle atrophy. His feet were almost black from dirt where we could not clean them. He had wads of dried skin and tufts of cotton from his casts all along his legs. It was pretty gross. We opted to take him home and throw him into the bath instead of having the nurse clean him up. We tried to get him to stand but that was a no-go. He could not walk at all. After the third day (Sunday), he still wasn’t walking and school was looming. We called the doctor’s office again and were told that it could take as long as it did when he was in casts to learn to walk again. Uhm… what? We’re not on school break now. That’s not going to work.
We worked with our son for almost a week trying to get him to walk unassisted. We finally called the school to report our progress and they told us to ask for a walker. This was the first time we had heard of using one. We called the doctor’s office again and got them to write a prescription for a walker. This was required by the school or we could not bring it on property. We ended up getting a small walker off of Amazon as it was cheaper and faster to have it here. Our son was able to use it without issue.
The following Monday, he was back at school with the walker. There was no embarrassment this time as he liked moving behind it. It took almost 2 weeks before he was able to walk unassisted. He missed one full week of school until we got the walker. He spent about a week and a half at school with the walker before he was able to stop using it. It was frustrating because no one warned of this. We assumed that it would only be a few days until he was walking unassisted after the casts came off.
My happiest moment of this whole experience was seeing him stand flat-footed without his casts. It brought tears to my eyes. It has been roughly five months since it all started, and I still can’t get over seeing him walk flat-footed. He does occasionally go up on his toes when he’s playing which freaks me out. We just yell out “Flat feet” and he goes back down. I don’t worry as much because when he’s just standing around he’s flat-footed. He can run longer without getting tired. It’s like he is suddenly in love with running. We’re going to re-introduce him to bike riding this summer as well. At his last PO appointment, the doctor declared him done and this long process was finally over.
If you’re going through this, I’m sorry — it’s awful. It makes no sense that a kid can’t stand flat-footed. It’s not your fault and it’s not your child’s fault. It’s just something that is. Don’t assume it’s something your kid will grow out of. I would recommend you start with a conversation with your child’s pediatrician. I would recommend at least talking to a Pediatric Orthopedist before starting physical therapy but I am not a doctor nor do I play one on TV. But if you find that you are being threatened with the boogeyman of surgery, please know that it sucks but the end result is worth it. I’m grateful every day when I see my kid walking normally.