Toe Walking

[gandycat]

Hi, since I've not done a formal introduction.....I'm Susan, mom to Ben (almost 10) and Emelia (almost 7). Ben is diagnosed with SPD only, nothing on the spectrum. But he has a lot of the same physical issues as a kid with autism including toe walking; body awareness issues; weakness in his trunk, arms and hands; gross and fine motor delays.... He's really doing very well despite these issues. He actually jump roped for 12 turns last week at PT, a huge improvement over a year ago. He has no behavior issues and thrives academically.

So, my question is about toe walking. He's done it since he started walking and it has never let up. He's gone thru lots of testing over the years by an OT, PT as well as a pediatric neurologist. Everything has come back normal. He has tight tendons b/c he toe walks, not the other way around. He toe walks to get sensory input (some kids do it b/c they don't like the feel of their heal on the ground). We've done AFO's in the past and he's also had serial casting. After the casting, he walked normally for about two months and then slowly he built up enough strength to go way up on is toes again. It's totally unconscious, he does it w/o thinking. When he's reminded, he goes right down to flat feet but then he's right back up on his toes. We could go back to AFO's again, they force him to walk on his flat feet but he *really* hates them. He has never really taken to them and honestly, they make him more clumsy than he already is (the shoes are two sizes bigger than his normal and he already wears a man's size 9). I should mention to that he is VERY tall for his age, he was 5'3" at his last check up (I'm 5'9" and dh is 6'1, the ped assures me he's just tall and there are no medical issues around it). I keep thinking that at some point he'll just be too big to toe walk, that his body weight will be too much to hold up. He's only 95 lbs now and pretty thin for his height.

I'm just wondering if anyone here has any experience with getting a kid to stop toe walking? I keep thinking that there must be *something* that I haven't come across yet to help. Thanks for any help you can give!

 

[bookwormde]

I do not have any direct experience with toe walking at that age, but with any variance from typical a NT profile I first ask a few question. Does it create any long-term physiological problems that are not reasonably easily managed? Is it in any way seriously psychologically damaging (balancing against all the damage from worrying about it and trying to “change it)? And first and foremost does it bother him to a significant extent?

I am not sure it is “unconscious” as you think, while he does not think about having to do it, he knows that the sensory response is helpful. If he perceived it as a major social issue, at his age he would (or in the future will) make decisions about using it selectively.

I know everyone has heard me say this before but SPV is part of what makes up the Autism genetic spectrum (actually appears to be about ¼, with social skills/TOM, EF, and an assortment of other characteristics making up the other quarters). While social skills/TOM and EF tend to go hand in hand, very often the other of the characteristic can be isolated or substantially unrelated. I wish the world would loose the perception of Autism and just understand that they are all just a bunch of evolutionary neurological variations (not necessarily either “good” or “bad”).

bookowmde

 

[gandycat]

Thank you for the reply. I'm sorry if I sounded like I think autism is a 'bad' thing. I didn't mention that Ben isn't diagnosed with it b/c of that, just so people would fully understand what his behaviors/issues are. I totally understand that SPD and autism overlap very frequently (and really I don't have an opinion of it being on the spectrum or not, but for the moment it isn't, that's all I was referring to). He's been evaluated more than once and he only has SPD symptoms. I wish SPD was officially on the spectrum b/c then he would be eligible for a whole lot of services here in PA that he isn't now!

To answer your questions....it causes long term physical difficulties that will need to be corrected. He doesn't just go up a little on his toes, he walks on the ball of his foot and his toes. It causes the tendons in his feet and ankles to shorten (needing serial casting or surgery), it also causes tightening of the tendons in the hamstring and back area. He is very aware of it and does not want to do it but we don't pressure him at all. We have a non verbal cue that reminds him to walk on flat feet and he is receptive to that. As far as long-term physiological problems, if he continues to toe walk forever it won't be like he can't function somewhat normally. But he'd need intervention that he deosn't want to have. He really does not want to have to go to PT forever and to do casting or AFO's or have surgery.

I do believe it is unconscious for him b/c of the conversations we've had with him. He talks about not being able to walk on his toes when he tries to but walking on his toes when he's not trying or doesn't notice. I believe it is a sensory message from his brain that he just does without thinking about it. He is very aware that it makes him lose his balance, etc. and he doesn't like that. Luckily he is a very likable kid who doesn't get teased. He has a great core group of friends that will also remind him to not walk on his toes and he actually appreciates it. They all saw his casts and braces and try to help him. He isn't bothered by that at all. It's something that he would like to stop but can't. He actually is pretty aware of his need for sensory input and has adapted to providing it for himself w/o us intervening (not always but a lot of the time, especially at school).

And no, I don't feel that there is stress related to 'changing' the behavior. Ben would like to walk on his flat feet, he obviously doesn't quite know how to do it so I'm looking for things we haven't thought of to help him. We totally embrace his unique qualities but that doesn't mean we won't help him in any way we can. I agree that SPD/autism are neurological variations but some of them make Ben's life harder than it would be w/o them and that's not always easy for him. I never make him feel like b/c he's 'different' that it's worse or bad. Our favorite saying is...'it's just how God made you'.

Thanks for the reply

 

[bookwormde]

I was not thinking that he was that well informed and self aware, that is great and makes the situation much easier. I would try (I know it is not instant or easy) to develop PT that he can do at home to provide stretching each day. The long term thing is to try to find a sensory substitute (again easier said than done) do not limit you “search to just propreceptive area, as often other areas will suffice. I would try to find out if there is any underlying areas of stress that he is not aware of or has not let you know about since very often the needed intensity and duration of the “sensory massage” can be greatly reduces if there is an opportunity to reduce any anxiety.

bookwormde

 

[gandycat]

He is actually ending PT in a couple weeks b/c the PT is out of things to work on with him (besides the toe walking). We already do stretches at home and I've asked her to make me a schedule of other things to do thru the week.

He's a pretty laid back kid, the only thing he ever identifies as stress is feeling shy. His teachers are always shocked to hear it though and say he is a very friendly kid and seems really at ease. I know when he was smaller, feeling anxious (like at family parties where he didn't know everyone and also was over stimulated) upped all of his sensory needs. In general I don't notice it as much now. But that's something I'll keep an eye on with him.

The PT threatened to put rocks in the toes of his shoes, lol. I keep wondering if there is something like shoe insert that might help to give him some sensory input.

Thanks for the ideas and for your perspective

 

[bookwormde]

Your son sounds like a great kid and an amazing self-adapter. As a self adapter myself, we appear “normal” but in all but the most familiar surroundings we still have to do a lot of additional work and it does often create some “background” anxiety (I was never aware that it was anything unusual during growing up). As I have become studied in NVs and worked with my son and other families I have improved my “adaptation skills” even at my age.

With the intelligence and self awareness of your son, I would recommend that he read some of the sensory books by the leading clinicians in the field, Sharon Heller comes to mind, although she is more focused on the sensory defensive end than that sensory seekers.

While I know he is nowhere near being Aspergers, it would likely help him a lot to read Tony Attwood’s “the complete guide to Aspergers” c/2007 available on Amazon for about $17. While it sounds like he only displays a few of the more sensory based characteristics, it may help him with some of the areas which he self adapted for and allow him to be more efficient in these areas and it does have a lot of practical information and perceptions about SPVs.

It sounds like you have done an amazing “job” of parenting him.

There are quite a few other sensory threads in this section and lots of other parents helping their children adapt for SPV so hopefully others will have some ideas and experiences also.

bookwormde

 

[gandycat]

Thank for the ideas. I've always explained to him in a way I hope he understands when he's asked any questions so he has some idea about how his body works. But he is probably old enough to read some things on his own. I just checked our library system and they have both books that you mentioned so I'll check them out. I actually have a couple books about SPD for kids on hold at the library too.

I worked with a lot of Asperger's kids when I was a therapist but it's been 10 years now. When Ben was 3 and first evaluated, there was a lot of talk of Asperger's but once the therapists got to know him for more than an hour, they would always change their minds. I was sure from the beginning that it wasn't the correct DX. He's incredibly sensitive to other people. He is amazing at picking up cues. Sometimes I think it actually makes it harder for him b/c he is totally aware of when people are irritated with him. There have been times when kids didn't want to sit next to him b/c he moved around too much and it was really upsetting for him. When I was a therapist (starting in 1991), we had so many kids with ADHD that now looking back I'm sure had SPD. I'm thankful that we've had great OT's and PT's to work with Ben and that there's a lot more knowledge out there now. And there is obviously a lot of overlap in AS and the SPD part of it so I think it will be helpful to take a look at that book.


I'll do a search of the forum again too to look for more SPD info.

Thanks!

 

[Kellea]

Just a random thought that came to mind...what kind of shoes is he wearing? My son has to be in AFO's but he has worn them since he was about 4 and doesn't seem to care. He calls them magic shoes and the other kids in his class are actually jealous at times. My thought was if your son was in a high top tennis shoe like maybe a Reebok that had the velcro straps at the top it might make it more difficult for him to toe walk and he might get more sensory input from that.

Kellea
Mom to DS, age 7, CP, Sensory Integration Disorder and Apraxia

 

[gandycat]

Just a random thought that came to mind...what kind of shoes is he wearing? My son has to be in AFO's but he has worn them since he was about 4 and doesn't seem to care. He calls them magic shoes and the other kids in his class are actually jealous at times. My thought was if your son was in a high top tennis shoe like maybe a Reebok that had the velcro straps at the top it might make it more difficult for him to toe walk and he might get more sensory input from that.

Kellea
Mom to DS, age 7, CP, Sensory Integration Disorder and Apraxia

Thanks for the idea! When he was smaller, I actually would put him in boots or more hightop shoes and it did make it a bit harder for him to toe walk. He did his best to keep doing it, lol. I'll have to think about that again. I've considered getting 2lb ankle weights and having him wear them. They provide a lot of input for him but they tire him out too.

Thanks for responding

 

[ecarraro]

So, my question is about toe walking. He's done it since he started walking and it has never let up. He's gone thru lots of testing over the years by an OT, PT as well as a pediatric neurologist. Everything has come back normal. He has tight tendons b/c he toe walks, not the other way around. He toe walks to get sensory input (some kids do it b/c they don't like the feel of their heal on the ground). We've done AFO's in the past and he's also had serial casting. After the casting, he walked normally for about two months and then slowly he built up enough strength to go way up on is toes again. It's totally unconscious, he does it w/o thinking. When he's reminded, he goes right down to flat feet but then he's right back up on his toes. We could go back to AFO's again, they force him to walk on his flat feet but he *really* hates them. He has never really taken to them and honestly, they make him more clumsy than he already is (the shoes are two sizes bigger than his normal and he already wears a man's size 9). I should mention to that he is VERY tall for his age, he was 5'3" at his last check up (I'm 5'9" and dh is 6'1, the ped assures me he's just tall and there are no medical issues around it). I keep thinking that at some point he'll just be too big to toe walk, that his body weight will be too much to hold up. He's only 95 lbs now and pretty thin for his height.

With the serial casting, did he also have Botox injections?

My DS is 6 and toe walked from the time he started walking, he's been in OT / PT / Speech. His official diagnosis is SPD / ADHD - Severe Type.

We tried AFO's . . . he broke one pair & bent another b/c he was able to toe-walk in AFO's that we were told would would 100% prevent the toe-walking. The only AFO's that "stopped" it were the ones that go all the way to his knees. We had CT scans to check his brain and spinal cord . . . Horse Therapy (OT) to help his fine motor skills . . .

Anyway, he is rarely on his toes anymore . . . he's had 2 rounds of Botox injections. The first when he was 4 & he had the casts on for about 3 1/2 weeks. Then, again when he was 5 (about 9 months later) and he only had the casts on for 1 1/2 weeks that time. We wore the AFO's at night-time only after the 2nd round of Botox & casting.

If you want more info on the Botox let me know . . . not sure if this is what you mean by "serial casting".

 

[gandycat]

He did not have botox injections with the casting. The serial casting just means that the casts were in a series (that's what our PT's call it anyway, lol). They stretch the tendon a bit and cast, leave it on for a week and then recast with more stretch. He had 6 weeks until his mobility was normal. The problem is that he starts toe walking again after casting, slowly tightening the tendons again. From what our PT said, they do the botox when the reason for the toe walking is that the muscle is tight. For Ben, the muscle is tight because of the toe walking. Does that make sense? I'm sure thought that different PT's probably have different ideas about it.

His AFO's are knee length and they do stop him from toe walking, they are just very hard for him to wear. He's never really adapted to them and he's very clumsy with them and can fall on steps/uneven pavement. He did wear a pair at night also but his PT didn't think they were helping much.

I'm glad you found something that works for your son! And thanks for the feedback

 

[ecarraro]

He did not have botox injections with the casting. The serial casting just means that the casts were in a series (that's what our PT's call it anyway, lol). They stretch the tendon a bit and cast, leave it on for a week and then recast with more stretch. He had 6 weeks until his mobility was normal. The problem is that he starts toe walking again after casting, slowly tightening the tendons again. From what our PT said, they do the botox when the reason for the toe walking is that the muscle is tight. For Ben, the muscle is tight because of the toe walking. Does that make sense? I'm sure thought that different PT's probably have different ideas about it.

This is the exact same thing that happened with my DS . . . they determined that the tight muscle was directly related to him walking on his toes. But, he had to have the CT scans to make sure that nothing was causing it neurologically.

The botox makes it IMPOSSIBLE for them to get on their toes b/c it deadens the muscle for 3-6 months. So, since they can't get on their toes, they start to re-train themselves to walk correctly. After 4 months, my DS started toe walking again but no where near as severely so they did a second round of botox & he hasn't needed any for 1 1/2 years.

Anyway, have you gone to a pediatric orthopedic surgeon?

Good luck!

 

[gandycat]

It's been a while but he's been to an ortho as well as a neurologist He had an MRI and lots of other tests to rule everything else out. Thanks for the info, I'll talk more about Botox with the PT. After the casting, he wasn't able to walk on his toes for about 2 months but eventually built up the muscle strength. Thanks again.

 

[rangermom]

I just noticed that you posted on my thread. I don't have any ideas to offer, since I am very new at all this, but just wanted to give you support.

Have you thought about changing his PT? I'm not thinking who he is going to right now is not good, but sometimes just a new perspective can really help. Based on what I have been told in regards to my son, is that if he continues to toe walk he will have foot problems later from his body weight being on his toes.

 

[CanadienneDisneyfan]

I have been reading and learning a lot about toe-walkers. My adult step-son is a toe-walker. He has been diagnosed as being severely cognitively delayed, with ADD, and PDD. He has never received any treatments for his toe-walking. He is a big guy of 5'6" or so, and he's on the heavy side of normal weight. He's now complaing about sore knees and back. I hope to get him to try Physio and maybe get an orthodic made for him. We're going to Disneyland for our first, and maybe only, family trip this summer. I'm worried that he'll be too sore after our first day to enjoy an entire week.

 

[peemagg]

I developed toe walking after a surgery that caused some nerve damage. Have they done a nerve conductivity study? The nerve damage has also caused the feet to turn inward and the toes to drag (quite a site, toe walking with dragging toes while turned in). I now have braces from hips to toes to correct this. They work fine when wearing them, but the nerve damage also makes wearing shoes and socks and the braces difficult to wear for long periods of time.

 

[CanadienneDisneyfan]

No. I am pretty sure nothing has ever been tested in the past. He has always toe-walked, and I don't believe anyone ever noticed or thought it was an issue (he has so many that they may have let this one slip). I'm concerned that he's not going to be able to continue walking this way now that he is older, taller, heavier, and having to get into the workforce. Now that he's in a work experience position in a store 3 days a week, for 4 hours on each day, he's complaining about his knees cracking, a sore lower back, and sore legs.

 

[Disfanx4]

I don't know if your son may be to old to try this, but when my daughter was younger and was toe walking we used a sock like device with a squeaker in the heel (sorry. Can't remember the name) we told her that every step she took should squeak it became a game of sorts. Daughter has ASD/SPD she loved the squeaky noice and over time it seemed to work, she rarely walks on her toes now. With the physio and the squeakers we were lucky she didn't need any surg or injections. Her O.T. Who she works with now for her SPD has noticed the her calf muscles and hamstrings are still quite tight but we are working on those.

 

[CanadienneDisneyfan]

Thanks for the idea. I'm not sure he'd appreciate a squeaking shoe, but I will see about putting the idea in his head. Maybe, with a custom orthodic, and some good shoes, he could learn to take a normal stride from heel to toe. He's willing to try, but he will need time and help.