Does your child have ITW?

My son over the summer has had an official diagnoses of ITW (idiopathic toe walking). As a result he is going to have surgery late October. Having surgery will also mean that BOTH of his feet are going to be in a cast for 4-6 weeks.

I was wondering if anybody else here has had to deal with that? How did the surgery go for your child? How did recovery go? Do yo have any tips for me?

Sounds like part of the “club feet” syndrome if you will. My oldest had club feet and our first line of treatment was the serial casting in which at the ripe old age of 2 days she was put in her first set of casts and her feet bent and held in place until the cast had solidified. We went in every two weeks to have the casts changed and her feet bent out and down further. By the time she was six months old we moved into the special shoes and a bar that the shoes fit in. She wore the shoes all day long and the bar was put on for her to sleep in at night.

We moved and got a new orthopedist who told us the same thing that the first one did, that on a scale of one to ten, one being the least and ten being the worst one foot was an 8.5 and the other a 10! The casting and shoes worked to a small extent but she needed surgery to correct her feet. So at 17 months she had surgery. She had surgery again at 4.5 years old on one foot as the other one was corrected well enough with the surgery.

She is now 29 years old and will never wear high heals because her feet and ankles will never bend to fit in them. She has one foot that is a whole 2 sizes smaller than the other one. This is the bad news, the good news? She walks and Jazzercises and does everything else a “normal” adult would do.

Feel free to PM me if you wish as I know how scary it is to hear “in order for your child to be able to walk well he will need surgery.”

My prayers will be with you and your family as you go through this.

Brenda V.

Thank-you for Brenda.

My son is 8!! So not only is this overwhelming for me it’s overwhelming for him. He’s at that age were he for the most part is well aware of what is going on. Serial Casting is also a treatment option for ITW, but our son’s condition is so severe that we were told that serial casting would not work and that he would need surgery anyway.

Thank-you for your prayers and response.

It hasn’t got to that severity yet, but my 4 year old grandaughter is a toe-walker, and has to be reminded constantly to walk on the soles of her feet, which she can do. But I spoke to a pediatric orthopedic surgeon on our staff about it, and she said that if she persists in toe-walking beyond the age of 6 it most likely will have to be treated with some kind of orthotics or cast to keep the achille’s tendon from shortening and requiring surgery. I am not sure of the details or if I understood everything she was saying. She said most kids grow out of this by age 5 or 6. The pediatrician is aware of the condition and the child can still walk on her soles, so he is just monitoring it and says to keep after her to walk on her soles every time we see the toe-walking to correct the habit. At least he is listening and knows there is a potential problem. So we are still in a wait and see position about this.

Is your son homeschooled? Then no problem, just adjust where you do things with him. He should get a walking cast sometime in there so he will be mobile, just more difficult to get a shower. There are special covers you can get these days for casts so you can take a shower though so if you can find them use them but in addition consider putting a plastic chair in the shower for him to sit on for the major part of his shower.

Yes, I think of these things.

How is he taking the idea of surgery? Does your hospital have a program where he can visit the hospital and see what is going to happen and where he will be?

Continued prayers.

Brenda V.

There was a time when my son could stand and walk on his soles (heals down). I would mention the toe walking as a concern of mine, year after year, but it was always dismissed as no big deal it would be something he would out grow. He could “get down” so it’s okay. I sincerely wished that we did something when he was 4, but that is us. Part of me thinks we would just have had to use ankle-foot orthosis.

It wasn’t until this pasted year when we noticed that he no longer could “get down” that we decided that me MUST address this! It’s because that fact that he walks really high on his toes and can no longer “come down” that we only have surgery as an option.

Yes, my son is homeschooled; so I’m not worried about schooling, education, etc. I know we can do our schooling around this: no problem there.

Even though BOTH feet are going to be cast, they are going to “walkable” cast. He is going to be given walker to aid in walking. The surgery itself is out-patient. It’s going to be done at a “surgery center” and not at the hospital. There also is not an option to tour the place before hand.

Over all, he’s somewhat worried about the surgery itself. His biggest concern is “not waking up”. He has to be put to sleep for this procedure. Thank-you Brenda for your suggestions re: how to care for him with the cast. etc.

And thank-you everyone for your prayers.

Wow, outpatient surgery for something this drastic huh?

Okay, ideas to help him deal with the surgery itself.

Here is a website with some book suggestions:

This might help all of you as you go through this. Something I read in passing while looking for this site was “children aren’t given enough pain medicines after surgery”. Hmm, something maybe you can look into.

Even thought his is day surgery, contact the hospital the facility is connected to to see if they have a program for you and your son.

Brenda V.

Medical advice and anecdotal medical experience should be discussed with a physician.

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