I am sorry to hear of your child’s difficulty. As a mom of a son with ASD (and as a former toe-walker myself), I wanted to share a bit of info that might be helpful. Have you considered the toe walking could be a result of yeast, bacterial or other toxicity? Doctors successfully treating autism with biomedical treatments have established these as causes. My son’s severe toe walking completely stopped when we treated him for bacterial and yeast overgrowth in his GI tract. Even with my younger son (no ASD but had severe yeast overgrowth), he began toe walking when he got yeast overgrowth and stopped immediately after treatment. The Autism Research Institute has lots of info on biomedical treatments.

Thanks for the comment and the words of advice. We have heard others indicate that his toe-walking could have been a result of yeast (candida) overgrowth. In fact, we do follow some of the DAN! protocol and his tests have indicated that his oxalates are very high, which indicates a significant yeast problem. We have been trying to reduce the yeast by using natural means and not using diflucan or other anti-fungals but we are having limited success according to his lab results. It is still something we are working on.

What we are dealing with now is the physical limitation that likely has resulted from extended periods of exclusive toe walking. His tendons have shortened and made it next to impossible for him to achieve the required dorsiflexion of his tarsal joint to allow proper heel-toe walking and flat footedness

Hi- just googling things- I found this site. My son, almost 12 has been toe walking for 6 yrs and now has fixed contractures. They have recommended the serial casting. He is as well, diagnosed with Autism. He is fully verbal and a wonderful kid! My son does everything on his toes!!! Please let us know if you do the casting. We will probably try this in the fall- after he transitions in to middle school.
Thanks.
Gail B in VT

Hi Gail,

Thanks for the comment and the information. We will be considering the casting in the fall as well based on the results of using the AFO’s. If they are working and stretching out his tendons then likely we won’t explore the casting option and continue to increase the degree of stretch the AFO’s provide.
I would love to hear the outcome of your son’s experience with the casting. I hope it works out well.

John

I just wanted to briefly share that we are also dealing with toe walking in our 4 year old. He has not been diagnosed with autism, although he had been diagnosed with a Chiari Malformation (asymptomatic according to the neurologist). He does have some very mild spasticity, so mild that it was missed by the orthopoedist and the pysical therapist, and finally caught by the neurologist. In any event, we began with casting, intending on a series of three. While he tolerated the casts as well as can be expected, and by the end of the two weeks was running and even jumping in them, once they were removed he was physically unable to walk. He literally crawled for a week (at 3 1/2 yrs old) due to the pain. He explained that the pads of his heels hurt, they were stinging. We have hypothesized that due to how tight those heel cords were and how he only ever did anything on his toes, either the pain was simply from the stretch, or perhaps it was similar to muscles that were “asleep”, as they did improve with massage. Regardless, we chose not to do any further casting. The one good thing that came from casting was that he did learn the heel-toe walk. From that point on it became more about reminding him and keeping his muscles stretched so that he is able to do it. We also are in AFOs, and have been since February. It seems to be providing a much more gradual stretch, and he has progressed to wearing them all day nearly every day. My understanding is for us, he will always struggle with the tight muscles, and will have to develop the skills and habits of keeping them stretched and remembering proper walking mechanics. His heel cords are not short, particularly, although some orthopoedists have recommended surgery (we have declined to this point) and botox injections (also declined thus far). Hopefully our experience can give you another example from which to base your own decisions. Good luck.

Nicole

Nicole,
Thanks so much for the comment and the information. It is this type of feedback that is incredibly useful and helpful as we decide how to proceed with K’s toe-walking. An issue that I consider strongly when thinking of the casting is how he will tolerate them due to his sensory needs. If we assume that his toe-walking was initially due to sensory needs and the tight heel cords are a result of perpetually being on his toes, then I don’t know how he will be able to manage the sensory issues from the casts. I’m afraid that it may be too much for him to tolerate for long. Thanks again for the information and good luck to you and your son.

Hi again John. I wanted to update you on our son, J.
J will be having a heel cord lengthening and hamstring lengthening in Dec prior to Christmas break.
He is about 4 inches off the ground at this point and complaining of pain.
We are doing this in New England at a major Medical Center and while- it’s not going to fix anything, it certainly will improve it.
J is NOT thrilled about it, but it’s ok….we have to do something.
Gail

Hi Gail,

Thank you very much for the update. I am incredibly sorry to hear that your son is having a difficult time and is in discomfort. I hope the surgery works out and relieves his pain.
If you are interested, and have the time, I would love to hear more about your son’s condition and what moved you towards surgery as a solution. Our son is only 4, but is very high on his toes, to the point of not being able to actually put his right heel flat without taking an abnormal posture. It is our fear that this is going to lead to other problems as he grows and we also have some concerns about the ability of his ankle joints to take all the stress as he grows and remains very active.
We have a follow up appointment with his physiatrist soon, and I will be posting again on the outcome (I’ve been very lax in my posting lately- it’s hard to get out of “summer” mode). He has not been interested in wearing his AFO’s lately and we don’t force the issue, but we may have to adopt a new strategy to help him improve.
This series of posts has become the most popular on our blog and gets numerous hits everyday, so your contribution is not only helping us, but others as well- Thank you.

Please keep us up to date as your son recovers, we are very interested, and our thoughts are with you and your family. Best of luck– John

First I want to say that it’s great to finally find other parents like us. I’ve searched the internet trying to find information about other children that toe walk and what solutions there are for them. When I came upon your blog I gave a sigh of relief. “We are not the only ones.”
My son is 7 yrs old and was diagnosed with AS two years ago. He walks on his toes as well. With trying to address his sensory problems as well as his OCD and anxiety disorders his toe walking was put on the back burner. So after two years of therapy two times a week then once a week, as well as his school providing therapy and counseling he is finally at a point where he doesn’t need to go. So now his toe walking is giving us as well as his therapists concern. For the past two months we have been doing intense nightly stretching and just recently added exercises to his regimen. After coaxing, and bribing our son to do these nightly stretches his calf muscles and foot muscles are finally stretching but he still continues to walk on his toes.
One of his exercises is for him to sit in a chair with his feet flat on the floor. We then put a toy on the top on one foot and he is to lift it up and set it down slowly 20 times. Then switch to the other foot. When he did this exercise the first time I almost cried, he couldn’t lift his foot off the ground but a quarter inch. His calf muscles are so incredible tight that he has a hard time putting his heal on the ground and this is after doing stretching and exercises nightly for two months.
His P.T. has suggested he get casts and we’re not sure he’ll go for this. Just putting on a band aid is a huge ordeal.
I am interested to know how things turn out for your son. When I was reading about him it was like reading about mine. Thank you for this blog I will be checking it for further news.

Interesting. My [adult] brother is still a toe walker and complains bitterly about ‘not being taken seriously’ as a child / wishes he had had some kind of treatment.

Both my boys are toe walkers. As their dad is a toe walker too, I just assumed it was a family thing……which in a way, I suppose it is!
Best wishes

Thanks for sharing. My 7 year old son have been toe walking since age 2. Here’s my story that I’d like to share….. He had a normal birth, normal development (starting walking at 14 mo’s) and is very bright. He’s been many neurologists, developmental pediatricians, and orthopedics.. All diagnosed him as an ideopathic toe walker. Although I still believe it’s neurological. We started him in early intervention at 2 for toe walking then decided it was most likely due to sensory issues. He had lots of meltdowns as a toddler, very sensitive to loud noises, crowds, certain clothes. No history at all of toe walking in my or husbands family. For 5 years we treated him for sensory disorder with OT, in school, and private sessions. He had botox injections with PT at age 3 and 6. He’s been wearing mafo’s each winter for 4 years. Here’s what I can tell you…. while I believe that sensory may is an issue for my son, none of the OT ever worked for him. His “sensitivity’s” have lessened over the years, but I attribute that to normal development/age. Botox with PT definitely worked both times, but with every growth spurt his heel cords just tighten right back up and we are back to square one. Now that my son is in 2nd grade, I think his “sensitivities” or “quirks” is caused by ADHD. So now I’m hoping if I can control the ADHD, maybe I can get him to stop walking on his toes. Although….all his life I’ve believed that his heel cords were tight because he walked on his toes. However, now I feel differently. A new orthopedic I just went to a new orthopedic who tells me that there are lots of toe walkers without tight heel cords. At believe it or not, I know 2 of them..I’m not sure why I didn’t think of it before. Regardless, he’s tight again because we were lax this summer and didn’t make him wear the mafo’s…so now we can’t get him in them even if we wanted to. I’m going to try serial casting in January and treat his ADHD. I’m hoping that once he’s back to 90 degress and can concentrated on walking heel toe, maybe it will be corrected. However, almost all of the research I have found has said that the heel cords tighten with every growth spurt and we may have to repeat this process for many years until he stops growing. If anyone has experience with serial casting, I’d love to hear from you. I’m concerned about what happens after the cast is removed. It seems many say that the child’s muscles are so weak they have a tough time even walking! My e-mail is nanchutki@yahoo.com.

Rose,
Thank you for the kind words and the information. We have not been doing much physio lately for various reasons, but I feel it is likely time to start again. One issue in the area we live is finding someone qualified and has the time to work with special needs children, but that is another issue/post in and of itself. We may try to start a “stretching” regimen but it is hard to get a 4 year old to do something that causes them discomfort and it can be hard to make them see the need through rational discussion. We may have to resort to some form of bribery to get things going.
We are going to be seeing some other medical professionals to see if they have any insight/ideas to help before we consider the surgical option. I will be updating the blog as this transpires but I am not sure when the referral will take place.

Maddy,
Thanks for the information and the words. I enjoy your blog and find great humour and compassion in your posts. I’m not sure if you noticed but you are in my sidebar. Keep up the good work. I must say I’m envious of your copious output, if only I could be so organized…

Nancy,
Thank you for sharing your information and your experience. It seems that much of what we hear from others is very similar. I hope that this sharing of experiences and what others are doing is helpful, not only practically, but emotionally as well. Please feel free to contact us again as your son’s journey continues, we are all interested in your outcome and experience along the way.

I hope to be updating this series soon as we gain more information from a new referral and as our son continues to develop. Thanks to all who contribute and share. It helps more than just us as others find ideas and some level of emotional support from your stories.

Thanks again to all and best wishes,
John

Hi I found your blog while searching for answers in regards to my daughters toe walking. She is 6 years old and on her 2nd week of serial casting. She has been a toe walker for a long time and this year we have been given the run around with her. Georgina has had stretching, gait plates (which made no difference to her toe walking) and now the casting. After taking the casts off there is a lot of pain walking but she is high up on her toes the next day. We were informed this week that after the casting she will most likely have to have the botox injections as she doesn’t have a reflex action in her foot (or knee when hit?) My husband and I are very confused and don’t understand and I feel there must be more to it, I will be reading about your child’s progress with interest. Belinda

I posted a comment earlier. I wanted to update it. My son has been serial casting for several weeks now. We’ve gained a lot in the positive. But he will still walk on his toes if the casts are taken off. He needs to RELEARN how to walk which is the hardest part.
As for his legs being weak, yes they are but that’s actually good because he can do his stretches better. And he can’t resist as much.
It’s not all peaches but it is helping to some extent. We still don’t know if the end result will be what we need. And I’m still looking into surgery.. very cautiously but it might be needed. I hate putting my son through all this.

My son just turned three two weeks ago and has walked on his tippy toes since he started walking at about 10 months of age. We have tried therapy, supplements, and nutrition, but no success. We can’t bear the thought of anestesia (having a brain freeze on the spelling) and cast, etc. If anyone is having any success please write.

Thanks so much, Sherry

Hi Sherry and thanks for the comment. I share your sentiments of frustration and concern at the lack of information and discussion of treatment options.

I have not bee keeping up this thread, or the blog much lately, but do intend to add some more material related to autism, but also to toe-walking. I would be very happy to share what we have with you and tell you more about our situation, what we have done, and what the results have been.

Keep looking and please share if you find any good sources of information. We are still struggling with our son’s toe walking and would love to hear of more resources/information.

Take care,
John

My son is now 16 he is 6′2 and 227 pounds. He walked on his toe until he was 7. Our doctor told us it was normal…NOT. We finally took him to a sports medicine doctor who inturn sent us to a pedeatric neurolagist that gave us an answer: Cerebral Palsy!
They cut and streched his achilles put him in casts for 1 month and walla he walks on his flat feet. it was a long time in physical therapy (I highly reccomend it) he still will go up on his toes when he is bare foot but we stay on him … He was in pain when he woke up but was walking then running on the casts in a week! He is in drivers ed and has a problem with hand eye and leg coordination, but over all he is learning. Pray for us… driving with a teenager is wild!

I wanted to post an update on my son who just recently completed serial casting at Children’s Hospital in Philadelphia. He’ll be 8 in May. Each leg was casted separately for 4 weeks. Other than us having to drive into the city each week, the entire process was rather easy. He felt no pain, and was able to run, jump, walk on the cast. He had no problems with it, and we bought an adult rubber arm cast cover that he used on his leg when taking showers. We did the right leg first. He was sore for about a week and when the cast was removed he continued to toe walk on it.. He didn’t go down flat until a week later. The same thing happened when the left cast was removed and he had no casts on. He toe walked for about a week on the left. Then, a week later, for the first time in a long time, he could stand perfectly straight with both feet flat on the floor. He could walk heel toe and he could “duck” walk on his heels. So now…another 2 weeks past .. he’s completely stretched and can walk heel toe. Does he? No! He’s back to walking like he’s used to, up on his toes. Mostly in bare feet. He will walk real close to the ground in his sneaks and especially if we are running around the park all day. But he’s pretty much back to walking on his toes. Me and my husband are ok with it. We know it’s a habit… hard to break for him. If I had to the choice to do the serial casting again, knowing now what the outcome is…I’d still do it. We have to give him the opportunity. That’s probably why I won’t consider surgery. Because I think he’ll still toe walk, regardless.

Throughout his life he’s been to several neurologists and developmental pediatricians…all have just given him the “idiopathic” diagnosis. He’s an A+ student and can ride a bike, run, jump and loves to roller skate. We sent him to OT for sensory integration from 2 – 6 yrs old, thinking it would help his toe walking…. it hasn’t. He has been recently diagnosed with ADHD. And although the neurologists and pediatricians say that are not related, I think they are. He toe walks because that’s how he’s wired, that’s what his brain tells him. It’s not going to change unless he mentally makes it change. And maybe he will or gain a lot of weight to weigh him down! I’m leaving it alone for now….knowing though, that in about 3 years, I’ll most likely be doing the serial casting again….just to give him the opportunity.

Please continue to share your story…..every bit of info helps!

Nancy