Thursday, November 4, 2010

Idiopathic Toe-Walking

(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.

IMG_2190

She enjoyed getting signatures from family and then from friends.IMG_2191

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.

   IMG_2193

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.

34 comments:

Sincerely Anna said...

Wow, she is an amazing girl! I love the pink and purple casts and look forward to hearing how today's dr's appt went.

~Ginger said...

Just saw your FB update with the photo. What a precious little girl you have.

You know, I walked on my toes for years. I don't have big issues anymore with it, but a couple of years ago I was ready to undergo surgery for a foot issue and the surgeon told me I needed my tendon cut to stretch it. I ended up backing out of the surgery.

As I look at K I think of what a trooper she has been. I feel so fortunate to have been able to pray for her and to show her the love of God's people near or far.

You know she will remain in my prayers.

Thank you for the photo of the girls with the tattoos. It just blessed my socks off!

Sarah Joy said...

I am praying right now for K and for you guys to have the wisdom you need. I love how God is showing her at this young age how wonderful the Body of Christ is! Blessigns to you all!

Lindsay said...

ooo what a sweet girl! She looks so happy even though she must be fairly uncomfortable in the casts! So glad she has been feeling the body of Christ lifting her up!

Andrea said...

She's doing a great job and you guys are doing the right thing for her! I pray that she will not have to use the surgery, but I know that God will lead you & she in the right direction for her good!

Susan said...

Thanks for sharing your story here. It shows the determination of you, as a family, and the awesome spirit of your little girl. It has blessed me on this day when I am shedding tears for my grown daughter. They are our "little girls" no matter how old their age :o) I so concur with you about the prayer network of the blogging world I am so blessed to find myself a part of. The Body of Christ is what it's all about!!!!

I look forward to the progressing good reports.

Jules said...

I have never heard of or seen this before. I'm glad she is handling so well at such a young age.

weavermom said...

Ouch! Glad that it looks like she may be able to avoid surgery. What a precious smile she has!

And I'm so glad to hear that others are being sweet and supportive - what a blessing!

Praying that the next step will go smoothly with the hoped for results!

AnnG said...

What an amazing story of how God works in ways we never could imagine! Please keep us posted!!

maryanne @ mama smiles said...

What a brave girl! We'll keep her in our prayers.

I love the pink and purple casts =)

Melissa T. said...

I noticed my 7 month-old son was starting to do walk on tip toes when I held him up. Then I learned that letting him use a jump-a-roo caused him to walk on his tip toes.

We immediately stopped putting him in the jump-a-roo and he's never done it again.

mary said...

So thankful to hear that the casting has been helpful for Kayleigh!! Clearly I am hoping to avoid this for my Caleb, but it sounds much better than the surgical route, and what a trooper your girl has been!! Praise God!! Would love to hear a next update when you have the chance...

The Pennington Point said...

What a journey. God will be glorified...the ultimate goal. I have a cousin (now in his 30s) that did this and he still walks on his toes to this day. He has all kind of foot pain and problems because of it. I am so glad to see that you are taking action now to correct it. I was fascinated reading the post. It will be such a great testimony for her. Lisa~

Sittintall said...

Wow, Mary...that is quite a story. I had no idea you had this going on on top of your recent respitory issues with your kiddos. I'm sure this has been an exhausting month or so for you. I am so happy that you have a daughter with such a great attitude though. That has to make this process at least a little more bearable. I'll pray that her healing continues to go well. It definitely sounds like a tough road to travel.

PS My daughter has been a toe walker since 3 years old (when she took a ballet class), and we have to constantly remind her to walk on her flat feet. Our doctor has always said not to worry about it either, but after hearing about your story I think I might keep a closer eye on her feet.

Becky @ BoysRuleMyLife said...

I, too, found very little on the internet about this. So I hope you don't mind me adding a bit of our story to comments for future readers. :)The full story can be read here ~

http://boysrulemylife.blogspot.com/search/label/Toe%20Walking

Our journey with idiopathic toe walking ended up with us going down the surgery route. We were finally referred to one of the best pediatric orthopedists in the country (who happens to visit our area once a month!) His opinion was that no amount of stretching or serial casting would correct the severity of his shortened tendons.

We didn't want to settle for that so we did PT, stretched at home, bought high top boots, and tried everything we could, but inevitably agreed to the surgery.

His surgery was actually not a cutting of the tendons, but puncturing small holes to weaken them before the casting.

He was in casts or braces for a total of 6 weeks (first 10 days of no walking at all) and I must say that it has been a success. He, too, had some major pain, but thankfully we had some heavy pain meds for him.

It was amazing to watch how much he would still want to do even though he had casts on both legs!

Little people are so inspiring! :) So glad you have seen improvement in K's walking. I hope it continues!

Sibyl said...

I'm glad I ran across your blog. My 3 year old Gabrielle has idiopathic toe-walking as well. She just got her first set of casts yesterday and seems to be doing pretty well with them. Right tendons were so tight that they couldn't bring her foot to neutral, so walking is a little difficult, but it doesn't phase her. I must admit I was teary-eyed as I watched her struggle. Your daughter's story encourages me that this may work for my daughter too.

pianogal said...

Thanks for your story! My boy is 6 now and walks all the time on his toes. We are very concerned and the word around our house is "HEELS!" His siblings constantly remind him and I believe that he can walk on his whole feet if he chooses, but it's just a habit. Where did that develop from? A walker perhaps? We are going in the doctor soon to see if there is anything we can do. I've looked all over the internet for some solution to this. Best of luck. Your family is darling!

heather r. said...

Thank you for your blog. My son and daughter are both getting their first set of casts tomorrow. My son is 5 and my daughter will be 3 next month. Both of them have tiptoe walked since they began walking. My son has had a lot of knee pain over the years, is clumsy and often complains if having to walk too far. We "watched and waited" with him until we just couldn't wait anymore and decided to have him see a ped orthopedist. Just by luck I brought my daughter with me as she was home from school sick that day. The doctor immediately saw my daughter with the same issue and found both kids to be not even at 90 degrees in one of their feet. We are nervous to begin this journey but know it is the right decision. Several friends have been negative, saying they will grow out of it. It's nice to get support online from people who understand that this was not a decision we came to lightly. Thanks!

Cheri said...

I just found this post while looking for a picture of what serial casts look like. My 7-year-old will be getting them on tomorrow. I'm nervous about it for her sake, but it is definitely time to do it. Thanks for posting in so much detail! I'll share these pictures with her in the morning.

Ms. wavvi said...

Thank you so much for posting this I ha e looked all over the web for info and this has helped me the most. My daughter is a tippy toe walker and we are getting ready to do the casting. And also tgose pictures helped because I was able to show her what she was going to have on. Thank you good luck and may your family have many blessings

LoriT said...

THanks you for posting this entire blog. Our 5 1/2 year old daughter will be casted next week. Your blog's info and pictures helped our family much! I am so happy to hear about your amazing daughter. Thank you for sharing. You have a beautiful family.

Emma's mommy said...

Hi, I came across your blog and was so excited to find it. Our daughter will be having serial casting soon, and it was nice to be able to show her the pictures of your daughter with the casts on. It really eased her fears a lot. I have read a lot of your blog and am wondering if the casting was a success. I would love to be able to talk to you about it, as I am very nervous about the whole process!

Anonymous said...

Hi Cheri I to have a 7 yr old son who has got casts on for idiopathic toe walking. Just wondering how much Thay have helped or what you done next? He has his 2nd lot on atm. He has had a growth spurt so had to be plasted again.

Anonymous said...

Hi my 7 yr son is also a toe walker and has been for a long time now.His tendons are short and thay classed him as idiopathic' back in Sept 2012 he had his first lot of casts for 4 wks having them changed weekly. I was upset for him but Thay are not as bad as I imagined! Anyway he improved quickly and was walking flat which was great now he has had a growth spurt he's back to his old tricks and has plaster back on now maybe for 2 wks.he also has physio I just wish that there was a permanent solution.I am thinking of having the op but not shore.Thay have mentioned night splints to me as well.

Teresa said...

If you could update this post to either direct to another post that follows up or just add a quick follow up that would be helpful! I would like to know how successful the casts were, how long your daughter had them, did she have any pain or activity issues,and any other helpful information you might have! We are starting down this path with my 6 year old. Just PT for now, but I think the casts are going to be inevitable. Thanks for what you did share!

Teresa said...

I found your update post after using some PATIENCE! Great information! Thanks again!

Caroline's Mommy said...

Wow! How wonderful for her! My daughter started walking on her tip toes as soon as she started to take her first steps. She is now 3 and a half and will still walk on her toes sometimes but has been walking flat footed for the past 8 months or so. I have a question, did your daughter complain of foot "cramps" as a toddler, not waking in the night with "growing pains", as many people think with small kids. My daughter has been complaining of foot cramps for a few months, daily cramps, usually during the day and early evening but never waking in the night with pain. I just wonder if maybe it has something to do with the tip toe walking and now walking "flat". Just wondering your experiences with that!

Joy said...

I just found your blog searching for info on toe walking. I am about to make an appointment for our son to address his toe walking. He's 5.5. Thanks for the info!

Jessica Vazquez said...

Hi I have an 8 yr old son with autism and for years believe that this condition was the cause of his toe walking .What a major mistake he got a brace which the doc said will help him put pressure on his heal in order to bring it down little by little.Im so happy your little girl is walking flat foot now and I
wont give up hope on my son your a great mother and just know that there are many of us in the world with the same or worse problems.

Anonymous said...

I know this is an old post but my 7 yr old son is getting serial casting done soon he also need arch support not worried. He has been toe walking for yrs seen a podiatrist who had inserts made up but he still toe walked al the time so we got a second opinion. We will do the serial casting. If that doesn't help we will have to do serial casting and Botox. So glad I have other ppl going through a similar situation.

Anonymous said...

Thanks for your story! We just started serial casting on my almost 5 year old son today. He is doing great, but I will be sure to monitor his activity. Wishing your daughter great success!

gs said...

Thank you for this post, it is something I really needed to hear. My 4 year old daughter just got serial casting 2 days ago. She didn't start out as a toe-walker but has progressively gotten worse. By the way, she has the same pink and purple casts.

Anonymous said...

My 10yo son is starting his serial casting next week. He has had MRI scans, nerve conduction, studies and just started physio who is the one to suggest this. I hope your girl has overcome this by now and thank you.

Anonymous said...

Both my daughters have been toe walkers from the get go. My youngest was serial cast for several weeks and it worked well. She was just 3 years old. The elder has had it done twice now for several weeks each along with physio. Now at the age of nine and she is worse than ever, I am looking to surgery as a solution. She has knock knees, a very swayed back and cannot straighten her legs really at all. She tries to squat on the dining chair instead of sitting these days, that's how bad it is. I hope your little one succeeds with the castings. I can't stress how important keeping on her when they are off. I'm hoping surgery will help my girl walk properly after all this time.

 

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