I came across your blog when I googled toe walking. My almost 4 yr old had toe walked for as long as I can remember. Last year he had castings done due to the fact that he had limited degree of anckle movement. They were on one week and then removed and then we put them on every night with velcro. We had many sleepless nights, but over all he talerated them really well. (They did give us a form that if need be we could go to the hosptial and have them removed at any time) After the second set of casts he had gain most of his range back, but after a few weeks of normal walking he did go back to toe walking. In January he started seeing an ocupational therapist and is doing pretty good with his sencery and balence issuses. Before he could not even get on a swing with out fecking out but now he is doing much better. He still walks on his toes, but it is definitaly less then in was. We are now trying to break him of the habbit. How have the AFO’s been, I might bring them up to the ocupational therapist. They may be benifitial with my son in breaking him of the habit of him walking on his toes.

I also found your blog after googling for blogs dealing with toe-walking. After reading all your posts, it seems that we are dealing with some of the same issues. My son does not have autism, but we have been trying to rule out everything else. The doctors blew me off for a long time because we have family history of toe-walking. (both my husband and me) We have tried botox, serial casting, and he has been wearing AFOs for the past 2 years. We did gain some range after the initial botox and round of casting, but after the second round of botox didn’t see any improvement. I won’t put my son through that again. Most have wanted to call it ITW except for the neurologist, but today his physio had to admit that there is some spasticity. I know the frustrations that you have. I have been fighting this for two years. The physical therapy. No one having any answers. Has your physical therapist given you any wedges for your son to stand on? My son can’t stand on them for long, but they give his heel cord a good stretch. I usually let him play game boy or something.

Anyway, like you, my son could get his feet flat at one time, but as he grew it got worse and worse. To the point where he could not get either foot to neutral. I think for us the AFOs have made the biggest difference. They force him to walk in a heel-toe gait, but the minute they come off he is up high on his toes. Oh, my son’s physio is admitting that at some point my son will need heel cord lengthening, but we are trying to put it off as long as possible. We are worried that he will have it done and then have a growth spurt and it will shorten again. After some research, I have found that it does need to be repeated sometimes. My son’s PT assistant also walked on her toes and she had the surgery when she was in high school becuase she could not get her feet flat after so many years of toe walking. You know, she still kind of walks on her toes, but she can get her feet flat. She and I both complain of foot pain, so I know that getting this solved is very important. Sorry this got long. Best wishes.

First, let me say I’m sorry it has taken so long to reply but I have been taking a break from the blog. Second, thank you for sharing your stories and information. It is not only helpful for us but for others that read this posts as well.

It seems that many people are dealing with many similar issues but as yet there does not seem to be any really good answers. What is important, as with most issues in raising a child, is to not give up and to continually seek answers and be the best advocate and voice for your child.

Thanks to both of you and I hope everything goes well. Please keep me informed if you find anything new or have any new developments. We are always trying to find successful strategies to help our son.

Thanks again and best wishes,
John

Hi John,
I found your blog when looking up toe walking (like others). My son is almost 7, not autistic but has minor sensory issues, and started toe walking sometime between 2-3yrs old. Like you our memory “failed us” and we “thought” it was happening from the beginning, but after looking at pictures recently realized it was several months after he started walking. We have been through 3 pediatricians before we were referred to an orthopedic dr. Started AFO’s 4 months ago at night, at the 2 month check up the Ortho said they were supposed to be hinged AFO’s to increase dorsiflexion – not our mistake but the place that fitted the AFO’s require several hundred more dollars to revise the AFO’s stating that is what the Doctor ordered. Ugh. I don’t want to keep pouring money into something if it is not going to be the solution to the cause. Last summer he spent some time with an OT for fine motor skills who identified the minor sensory issues – but all of the expenses are out of pocket and insurance will not cover so we have not been able to continue. He went to a neurologist and my son is scheduled for an MRI next week. If nothing comes out of that then the next recommendation is serial casting. My son can walk heel/toe and will do so if he is exhausted or we tell him to. The minute he is not reminded or walking on his own he is up on his toes, even worse when he does not have shoes on. We make him wear high tops or hiking boots and he still manages to get up on his toes.
Just wanted to say thank you for sharing your story. Perhaps if enough parents get informaiton out there, we will help have better resources for others facing these issues.

Michelle,

Thanks for sharing your story. I completely understand how frustrating it can be to have to seek new medical/professional advice to finally get acknowledgment of an issue. I can sympathize with the financial hardship the treatments can lead to and the frustration, as a parent, from having to stop something that is beneficial for your child because of financial reasons. It is hard to believe, but our AFO’s cost $1200! We are fortunate that much of that was covered by our extended health benefits but it is still incredibly expensive. Factor in OT therapy at $125/hr plus travel time and mileage and it can quickly become financially nonviable to continue treatments. We have tried to learn as much as we can during therapy sessions so that we can help out ourselves and use therapists more sparingly in a consultancy role from time to time.
I am hoping to expand this series of posts into a more useful resource/forum as it gets some many views compared to other parts of our blog. Stay tuned, hopefully more, and better, content to come…

Thanks again for your input and willingness to share and I share your hopes of having collective knowledge and experiences be helpful to others in similar circumstances.

John