Idiopathic Toe Walking

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REPRINTED from my previous blog from November 2010.

(This is a long post…but as we have gone on this journey of Idiopathic toe walking, we have found very little online that outlines the experience of other families.  My hope is that someone who needs this post might find it one day when they are wondering how things went for someone else)

My daughter, K (age 8), has been an idiopathic toe walker from the day she began walking.  And I am not just talking she walks by putting her toes down first.  The girl walks on complete tip toes, stands on complete tip toes, and never puts her heel down.

Because there isn’t a medical reason for her to walk this way, the diagnosis is “idiopathic” toe walker, meaning that it is a habit.

Lots of kids do this on and off for a time period, but very few keep it up in this manner.  Those who keep it up the way she has, decrease the range of their tendons, making it uncomfortable (and close to impossible) for them to correct the solution by “just walking flat feet”.

The doctors have varying opinions on the solution.  Our family doctor assured us year after year that she would outgrow this.  We had her refer us for some physical therapy when K was 4, but we didn’t stick with it.  The therapy stretched her tendons so that she was comfortable again and we moved on.  No one suggested otherwise.

Now that she is 8, we have increasing concerns about her toe walking issue.  Our first stop was the orthopedic doctor.  He took measurements of her ability to flex her ankle.  Most of us have a 15-20 degree range above a neutral flat feet position (toe being pushed toward leg).  One of her feet could not get above neutral, having only a –5 degree range.  The other foot could just barely get to neutral.  And keep in mind, this is with a doctor pushing on her foot as hard as he can.

Clearly, it was not comfortable for her to walk flat feet.  Her tendon is being stretched just to stand flat.

He recommended surgery based on the severity of the problem and her age.  The surgery would involve cutting her tendons in three places (small cuts) so that her range of motion would immediately be increased.  It would also be immediately impossible for her to walk on her toes because her tendon had been cut.  This would force her body to change.  It would also break the mental habit of walking on tip toe.

Of course, this was NOT the option we wanted to pursue until we felt we had exhausted all other options.  We knew that we could try PT and we could look into some other options, so we discussed that with the doctor.  He felt we were fighting a losing battle, but sent us to a physical therapist.

We began therapy and stretching her tendons 3-5 times a day.  After about 6-7 weeks, we had made a 5 degree increase in range on each foot.  Now both of her feet had ranges above neutral.  One foot was now at positive 1 and the other was at 6 degrees!  Of course, there was still a long way to go and breaking her mental habit was going to be the hardest part!

The therapist suggested that we attempt serial casting.  This is a process that involves casting both of K’s legs in leg casts, holding her in a neutral position.  This would help stretch her tendons and force her to walk flat feet.

And let me tell ya that this kid is an amazing person!  She has kept a great attitude during this process and cooperated with every step.  Here she is after her first set of casts, keeping her in a neutral position.

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She enjoyed getting signatures from family and then from friends.

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Interestingly enough, we did catch her quite a few times still trying to walk on tip toe with the casts on.  The doctor had warned us that this would happen, but we couldn’t imagine it.  But now we can.

Overall, during the first two weeks, we had one bad night.  We had let K immediately return to her running about all over the neighborhood only 2 days after casting.  That night, she was awake and in pain every 20-30 minutes.  It was horrid.  I felt so helpless to do anything for her.  The Motrin and Tylenol had no effect and it was so difficult to watch.

From then on, we kept her activities to a minimal, though she gets around just fine.  If we were headed somewhere that we had to walk quite a bit, we borrowed a wheelchair.  But for the most part, she gets around just fine on her casts!

After two weeks we had to return for a second set of casts.  The exciting news was that the doctor felt like her feet were at a 10 degree position “at least”, though he didn’t take any official measurements.  WOW!

She was then re-casted at a “greater than neutral” position, so when standing “flat feet” with her casts, her toes are really being pulled up toward her leg a bit.  Needless to say, we haven’t seen her attempt to walk tip toe in this set of casts.  It is just impossible!

We remain hopeful, yet open to any procedure necessary to help correct her walking.  We continue to pray that God will allow her tendons to stretch and her brain to retrain itself.

I think the best part of this process has been the way K has been able to see the body of Christ at work in prayer for her.  The day or two after her casting, she received her first card in the mail.  It was from an amazing woman that I have meet through blogging.  She sent K a note to let her know she was praying for her and included some pretty awesome tatoos for the girls.

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The letter made me well up with tears, just knowing that this is how the Body of Christ is supposed to function.  Family, friends, and blogging “strangers” came together to pray for my daughter.

K asked me, “Who is Mrs. Ginger?” and I was able to share with her that this was mommy’s friend from “the computer” who we had never met.  BUT, even so, she loves my kiddos and prays for them.  K was able to get a glimpse into the importance and power of prayer as well as the compassion and connectedness of the Church.

During this second set of casts, she received another card from a family she has never met.  The mother is my friend from middle school whom I have not seen since high school, but thanks to modern technology we are able to keep in touch.  Once again, K is being prayed over by more people than she knows.

Now, of course, her family and close friends are praying for her as well.  She has received notes and cards from many folks over these 4 weeks.  We are so grateful for the love and compassion shown for our baby.  God has continually used people in her life to love her and cheer her up.

And now we wait…

On Thursday (today by the time this is published), she will get her casts off and there will be a Part One conclusion to this journey.  It isn’t over.  She’ll have braces to wear and will continue with PT for awhile, but one major chapter will close.

We are thankful for God’s direction in this area and His healing hand on our baby.  We know that He is in control of the problem and the solution and we continue to rest in Him.

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1 thought on “Idiopathic Toe Walking”

  1. Vicki Smith

    Thank you for writing this.
    We are away to go through this soon with my 6 yr old. We are unsure about this but feel more comfortable after reading this.

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