I was recently looking at some home movies and photos from 2005 and 2006 and it is interesting that K walks with his heels down in, what appears to me, a normal heel-toe gait. I had completely forgotten this fact. His toe walking has become so deeply ingrained in my images of him and who/how he his that I had become convinced that he had always walked this way. I need to look back at more footage and try to see when we can start to see the change and see if we can corroborate that time with anything else that happened. These images of him standing and walking flat footed is in fairly striking contrast to how he walks today perpetually up on his tip toes, with the right foot being much more pronounced. When trying to walk in a normal heel-toe gait (we ask him to try from time to time) he spreads his legs and turns his toes outward and will walk for a few steps, usually less than 10.

For historical reference and to be sure that I have my facts correct, as I have just demonstrated that they can be skewed by my poor memory, I will attempt to start at the beginning and move towards the present.

• As previously mentioned K was able to use a normal mode of walking in a heel-toe fashion when he initially began to walk. I am going to investigate further to try and find a more accurate date of transition.
• We were told by some medical professionals that this is what kids with ASD do, and therefore it did not require any further investigation. We weren’t happy with this answer and sought out other opinions about why this may be happening.
• The pediatric orthopedist concluded that his Achilles tendons were just able to allow him to move his feet to the 90 degree position, and any further loss of flexion would likely need to be addressed with surgery. What was unfortunate about this referral was the lack of alternatives or investigation about the why of K’s tight heel cords. There was no discussion about whether this could be a neuromuscular condition, a purely neurological condition, or merely habituation. It was this visit that prompted us to seek out other opinions and took us to his physiotherapist.
• K sees a great physio. We used to see her weekly and her insight and observations were very helpful. Unfortunately, she could not form a good rapport with K and their sessions were never as productive as either she or we hoped they would be (I think this is a result of K being stubborn and that the sessions were hard for him to do and his acting out was a means of avoidance of physically challenging and uncomfortable “work”).

She had numerous observations we thought relevant and I am going to review her notes and update the pertinent information here.

• We have been VERY fortunate that K has had the opportunity to see some great occupational therapists. There is one however that is a fabulous occupational therapist, and it is safe to say that she really “gets him” and has great insight and suggestions for helping with some of K’s sensory issues. Kim thought that some of the issue was K’s inability to process sensory information correctly and in a timely manner (the book The out of sync child is really good at discussing sensory issues). We have done a fair bit of work in this area and have made progress but K still walks on his toes. To be fair it is very unlikely that the relatively short time K has been receiving OT would be sufficient to have a much larger impact and we have seen quite significant gains in sensory issues in other areas of his personality.
• At a recent visit to another physio she remarked on the differential level of muscular development on his right side versus his left in the calf area. His right is the one he will preferentially get “as high up on” as he can.
• Attempts to manipulate his right ankle to have his foot at right angles to his tibia always meet with him resisting, even when he is ASLEEP!

My research on toe-walking has lead to many places and the best description I can find that I think relates to K is as follows:

Tiptoe-walking is diagnosed as idiopathic (habitual) if no signs of neurological, orthopaedic, or psychiatric disease are detected. The diagnosis is one of exclusion…

All the information we have to date; an MRI, 2 neurologists, physiotherapy, occupational therapy, pediatric orthopedist, orthotist have not pointed to a cause of K’s toe-walking. Therefore, by exclusion, I am assuming that K has ITW as we have not had anyone provide us with any other cause/diagnosis. In early June he will be seeing a doctor at a neuromuscular clinic. She is a rehabilitation specialist, and we are hoping she may be able to shed some more light on the issue of K’s toe-walking. My assumption may be, in strict medical terms, incorrect as he does not meet all the criteria for ITW on the basis of his ASD, however we have not heard or been given a better reason other than his ASD which I don’t feel is an adequate response but it may be the best/only response we ultimately get.

In my research on K’s toe-walking I have come across some useful resources that I will list here so that I can find them again, and share on the off chance someone else may find the information useful. I am going to fill in some details here as they pertain to K and hopefully this can act as a reminder to me of where we are and what information/characteristics we already have.

Some links I found useful:

Toe walking

Toe walking

My random thoughts as I work through this post:

• K initially walked in a normal fashion.
• He originally moved in a very rigid fashion from the waist down. His legs were virtually locked and would move as a single unit with very little bending at the knee.
• His seizure focus is on the right and therefore not affecting his right side motor skills directly
• In retrospect as I write this I have seen a reduction in his flexibility of alternating feet when he goes up or down stairs. He will now exclusively lead with his left foot and therefore his left leg does most of the work lifting his body up the stairs
• Different shoes have differing impact on his gait. It can be hard to tell how his feet are positioned inside some shoes (eg. rubber boots give the appearance of flat feet but he can be on his toes inside them).
• Most shoes seem to improve his stability
• Kim (OT) thinks that something rigid like skates or ski boots might help him become more “aware” of his feet and help the situation.
• He was unable to tolerate skiing. This may have been due to the physical discomfort of the boots.
• If we try to get him to stand still with his feet flat he will turn his toes out and stick his bum out and lean forward, likely due to the inability to achieve a 90 degree angle with his right ankle and we are beginning to think that his hamstrings are overly tight further adding to the issue.
• When he goes to the IR sauna he will walk with flat feet afterwards. This has been noted on more than one occasion.
• He resists flexion of his ankles, especially the right one, even when sleeping.
• Get Tracy to review my information and fill in the blanks from my shoddy memory.

I would love to hear other people’s experiences, comments in this area.  As we are seeing a specialist early next month I would like to be able to ask good questions and explore our options for treatments.

Related posts:

1. Interesting implications for ASD I read this book review on an online media website and my thoughts, as they so often do, turned to implications for ASD and the...
2. Immunocal Presentation I recently attended an information session regarding a nutraceutical product and some of the research behind it and its benefits. I must say that initially...
3. Toe-walking: The next installment This is an update to a previous post and will include more personal experiences, though I do include some links and resources towards the end....
4. Toe-walking: Part 3 I thought I would update our experiences with using the AFO’s for K’s toe-walking, not only for us but for those that have been viewing...
5. A brief update. I haven’t written much lately. That should in no way be mistaken for a lack of “goings on”, but I have been working on some...