A friend of mine sent out an email about Jesse's toe-walking, asking for contacts for private OTs and she received this reply from an OT and sent it to me:
"I think it is a problem that needs to be addressed ASAP…especially for children with autism. I saw several kids with autism who were toe walkers (age 4-5) and it was not caught early and later required serial casting and botox. If you catch at this young age you may be able to prevent some discomfort and expense down the road. In my experience children can do this for a few different reasons. One may be they especially like the extra sensation through the metatarsal heads that they get. It doesn’t take long for them to establish a new centre of gravity and stay up on their toes and lose awareness of what it feels like to be flat footed. To start I would put in a sensory awareness program around the feet including heel pounding. This involves the child lying down with foot in the air. Caregiver support the leg above ankle with ankle at 90 degrees and then with palm of hand hits the heels of the foot (like giving five) several times. I pick a number and try to be consistent for the child’s benefit. I would also do an Achilles stretch at least three times a day and hold for 20 seconds cupping the heel in your palm, laying foot on forearm with the child's knee bent and then extend child's knee to get as much ankle range as possible. Walking on a semi-inflated air mattress or jumpy castle with no shoes helps encourage the child to come down off toes. Jumping also gives extra proprioceptive input through foot but watch to see if they are staying on toes. (This can also strengthen calves which helps them to stay up on toes! ) Generally you want to increase the child’s awareness of the bottom of their foot so the more sensation to the bottom of the foot the better (walk barefoot on grass, sand, scrub the bottom of the feet in the bathtub and with towel after)). A good game to play to encourage dorsiflexion is to hold the child's heel on the floor while she is sitting on a low bench and have him lift his toes to enable a small toy to pass under his foot. Another thing you can do is while he is on his toes is put a ball of playdoh under his heel and see if he will squish it. It is tricky and a common problem. There doesn’t seem to be a common answer as to why these kids present with toe walking but I would definitely do the stretching and closely monitor the ankle range. We have also had kids who we referred for AFOs to prevent any further loss of range. Likely at 2 loss of range isn’t an issue yet and it will be caught. Another idea if the feet are small enough are those sneakers called “squeakers”. Every time the heel hits the floor the child's sneaker squeaks. This can be reinforcing. You want to teach the child the idea of flat feet so that they will understand if they are on their toes and you say “flat feet”, what you mean.
Good luck. I hope that helps.
C.S."
I'm not including her name because I don't have permission to. I probably should get that. At the same time though, I'm worried she'd tell me to remove it, and then the info won't be there for other parents who might find it useful. So for now I'm going to leave it up.
I also want to add, that it doesn't take that long to cause problems with contractures. Jesse ended up in serial casting of his right foot at just 17 months of age. When he began cruising at 7 1/2 months, he was always up on his toes. Of course, at that age, you think nothing of it. Unfortunately we didn't realize it would be a problem until it was too late. Jesse's gross motor development, which until then had been normal or even advanced, was severely affected (he didn't even stand unassisted until he was 17 months old...the same day he took his first steps, actually). The casting fixed the contracture, and corrected the toe walking that we didn't even really know about. For a while. That was all last summer. Since then the toe-walking has slowly started creeping back in. I really took notice of it around Christmas. We got him back in to see a physiotherapist just after his diagnosis in February. But by that time he was toe walking about 90% of the time. He still is. Unfortunately, PTs deal mostly with the effects of toe-walking (decreased range of motion, contractures, etc...) and not the toe-walking itself. We have to see an OT for that. So Monday I'll be calling around to any and all private OTs that I find. Apparently we're already on the wait list for the Janeway Development OTs, but their waitlist is 18 months long. Only 16 months to go! ***groan***
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