Sunday, January 16, 2011

Idiopathic Toe Walking (an update)

Last time I wrote about K’s (age 8) toe walking, I summarized the background of her problem and explained our desire to correct this issue without surgery.  She was a TIPPY-TOE walker.  Whenever she walked, whenever she stood, she was on her very TIP TOES.  The picture below is April 2010…she has been walking this way since she began walking at age 1.

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Our parental desire to avoid surgery was against the opinion and advice of the orthopedic doctor.  He truly feels that our daughter will still need surgery and repeatedly reminds us that we are going against his advice.  Honestly, we are thankful that we have been confident in our desire to try alternatives with the knowledge of our daughter and our situation.  It hasn’t always been easy to have the professionals continually question your decision.

The good news is that things look GREAT!  In fact, the results are very promising and we are so grateful for K and her hard work.

When her casts were removed, K was immediately put in orthotics for her foot.  We immediately headed to the store for a wide range of cool knee high socks…she loved picking out some fun ones!

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She wore the braces for 22 hours a day for the first month.  During this time, her range increased from 8/9 (immediately after the casts were removed) to 15/16 (in a NORMAL range!).   *If you recall, we began this process at –1 and –5.  This increase was due to her PT and her commitment to do her exercises 3 times a day.  We were so excited.

At the end of month, the orthopedic doctor was clearly shocked at the results, but expressed, yet again, his opinion that she would revert and still require surgery.  Admittedly, this was quite discouraging, but I knew that he had the right to his opinion based on his experience, so I just smiled and nodded my head.  Afterall, if she does need the surgery, we certainly don’t want to have offended the surgeon!

He also wanted to remove her from PT completely.  I was very upset at that suggestion.  Her PT has been one of the one folks “on our side” through this process, completely hopeful and supportive of our decision to avoid surgery.  She has monitored K so closely and helped us make some great decisions.  In addition, the exercises have been so wonderful for K and have clearly built her muscle strength and flexibility.  Thankfully, I was able to convince him to continue to send her every other week.  (I need him to make the referral for our insurance company)

For month #2, K was able to continue to take a 2-3 hour break each day from her braces.  She also was able to begin to alternate the nights that she wore the braces on her legs.  Finally a break for her legs at night!!!

We continued to see great progress and whenever K was off of her braces, we never saw her walk tippy-toe.  When we returned to the doctor at the end of month two, our main concern was sore spots on her foot being caused by her braces.  It was quite clear that the doctor felt that this was being caused by her attempts to toe walk while wearing the braces.  He basically said so much when he came into the office.  Then, he reiterated his opinion about the surgery…again.

BUT, when he took off her braces and had a look, he admitted his error.  The braces needed some adjusting and her sores had nothing to do with attempts to toe walk.  He FINALLY admitted that we “might have proved him wrong”.  K’s feet are doing excellent and she is on the road to avoid surgery.  At that point, he suggested that we pick an entire day each week to let K take a break from her braces. 

So, she now wears her braces every other night, and everyday of the week except Wednesday!  We have continued to see her remain flat feet, even when playing basketball twice a week.  We feel quite confident that we are coming toward the end of the road!

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I was searching for a picture of her braces, but I couldn’t find one.  I found one more meaningful to me instead.  Before this process, we would never have been able to get a photo like this one…

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K has worked very hard to focus on her walking and exercises.  Without a doubt, this is a huge part of the reason for her success.  Yet, the fact that we homeschool has been a HUGE advantage in beating the odds.  The doctor has admitted to us that most 8 year olds just won’t wear the braces and they fight it until the parents wear down.  Most 8 year olds get teased at school and don’t want to feel different.  Thankfully, in our homeschool situation, the children she hangs out with at bible class and co-op classes wouldn’t dare make fun of her.  Instead, they have sent her cards, prayed for her, and supported her through the process.  I am immensely grateful that at the tender age of 8, she can’t even fathom someone making fun of her “difference” right now, nor could she see a reason to make fun of someone else’s.  In this case, homeschooling has definitely been a clear advantage.

While I worried about the “late” timing of our attack on this issue, once again God’s timing has proved perfect.  K is at the right age to stick with her exercises and commit to this change.  She understands what is happening and has worked hard to break her habit.  For her, this timing has been wonderful.

If all continues to go well, then at the end of this month she will be allowed to drop another day.  We will keep dropping days at a more rapid rate at that point, assuming we continue to see her walk flat footed.  I think we’ll be done with braces sometime before Spring, or around that time.  It’s been a long journey, but one we are thankful has worked out.

17 comments:

johanna said...

really good news, Mary!!!! Your a great momma!

M. Ring said...

Wonderful! What a great job she's doing!

Monica said...

I'm about ready to cry reading this. What a victory for you all! I don't doubt that God is going to use this in the life of your daughter in mighty ways.

Sincerely Anna said...

You have so many reasons to be proud of her. Way to stick to your convictions and knowledge of what K could do through her commitment to the daily exercises. This is a big deal - she might write about this on her college essays one day. I'm so glad she's had the support of her friends too. Yay for homeschooling!

Crystal Roberts said...

I have never heard of this, but wow, so glad you stood up for your little girl and things are progressing so well! I will remember her in prayer and hope she continues to work hard, it was a really great post!

mary said...

So happy to hear of Kayleigh's great progress and your ability to stay surgery free!!! We have been SO BAD about consistency with Caleb's daily stretching recently -- just hard to fit it in, you know? I'm way impressed that Kayleigh has stuck with the stretching and brace-wearing and so glad it has proved the surgeon wrong!!! Yay!!!

Jennifer@DoingTheNextThing said...

praise the Lord, Mary! that is such good news. i know it took a lot of courage and a lot of prayer to insist on a different treatment than the doctor, but sounds like you guys were right-on. congrats!

Davene said...

What an amazing story! I'm so proud of K - and you! - for persevering with this. The results are outstanding!

Susan said...

What a wonderful report and answer to not only her hard work, your wise decisions but prayer!!

sbarnett79 said...
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Becky @ BoysRuleMyLife said...

YAY!!! I find it sometimes *strange* (still, 10 months after his surgery) to look at Will and see him flat-footed. LOL! When you go so long seeing a child on their toes and envisioning them inches taller than they actually are because of the tip toes, there is an adjustment of sorts to their new stance - not only for them, but for those of us on the outside looking at them. Do you find this to be true, too?

So glad the casting seems to have worked for her! Fantastic news!

sbarnett79 said...
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sbarnett79 said...

Ok I have tried to repost this twice already and noticed both times I mis-spelled something or added an extra word somewhere so here is my story for the last time..lol
Hello there my daughter Grace is now 7&1/2 and is a toe walker and has been since she started walking as a toddler but then at the age of 4(well almost 5)-We went to the ortho doc here and he explained to us all about her condition -which to my husband and I never thought was a serious problem but the docs say it is.At this first visit the ortho doc decided to cast her for 6wks. After the first set of cast she didn't walk on her toes for a little bit but then slowly started to redo it until it was a constant thing so back to the doc we went(this is about a year later)and once again he decided to cast her. She was in good spirits about the whole thing and like your daughter enjoyed having people sign them.We actually went to Disney World during the first set of cast and got special treatment and back stage to meet all the princesses she was so thrilled and had them sign her cast.Now back to the second set, we had them removed per the doc after 6wks and this too seemed to have worked for a short period and slowly the same thing started to happen again.After realizing she was on her toes almost always now we went back to the ortho doc and he yet again put cast on and told us to check back in 6wks,well about a week and 1/2 into the 3rd set she was having a lot of pain and crying until one morning I woke up and decided to take her to the ER to have them removed.At this point I had decided that this was it and no more cast for us, well here we are almost a year later again and after seeing her normal doctor last week for her yearly physical, they set us up for a meeting w/ the ortho doc for this coming friday. My husband and I really are trying to avoid surgery and both myself and my daughter are nervous about casting.Her last experience was so bad it upsets her to know she has to go to the doc. I am trying to stay possitive and Know that God has a plan and that in the end it will all work out.

AnnG said...

What a wonderful praise!! I'm so happy that everything seems to be working out the way you wanted and you are able to "prove the dr wrong"!! Homeschooling has so many wonderful advantages and this is such a huge one for your daughter!!

Sheila said...

Hi my name is Sheila and my son is also a toe walker. We are in week 2 of his serial casting. I was so happy to find your blog just now and see of your daughter's success! I've been blogging about my sons toe walking on my Random Stuff blog. So glad to have found someone else who is dealing with this also!

Anonymous said...

This is so uplifting to see this blog. I just took my son to an ped ortho today that reccomended serial casting for my son who has always been a toe walker. He is an actor/singer/dancer and this is effecting his dancing and performing. He has a movie shoot in two weeks and then we will start his first casting. I am glad to have read this blog to give see that it is working for someone. My son is 11 years old, but short for his age. It appears to be heriditary since my husband also is a toe walker when he is barefooted. Praying for God to heal him and correct this through this process. my email is livingword@comf5.com if we could keep in touch that would be great to have support and encouragement from someone who has been through this already :)
God Bless,
Traci

Reagan said...

This is so encouraging to me! My 8 1/2 year old has also walked on her toes since she started walking and now my 2 year old is doing the same. We've seen some doctors but just keep getting told "she'll out grow it" in the mean time she's at that age when the way others perceive you is very important. We'll be getting another opinion VERY soon!

 

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