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Toe Walking

This morning, Maggie had her evaluation for Physical Therapy. In our quest to narrow down and rule out complications that could be contributing to Maggie’s delays, we wish to leave no stone unturned. In fact on Tuesday, at the request of the speech therapist who did her initial speech evaluation, she asked that an ENT examine Maggie’s mouth and throat to determine whether there’s anything structural inhibiting speech. The ENT used a long tube with a camera on the end to go through Maggie’s nostril and down the back of her throat to examine her epiglottis, trachea and voice box. The whole procedure took less than a minute, but was just as awful as it sounds. At least we can say with certainty that nothing is inhibiting speech, structurally speaking. This leaves developmental delays and neurological factors.

Her physical therapy evaluation was significantly less invasive. The physical therapist took off Maggie’s shoes, checked her reflexes, rolled her ankles, took measurements of the angle at her ankle for flexed and pointed toes, and watched Maggie walk barefoot around the room. Maggie will run, stop, leaning forward through nearly all of her movements. When redirected, she’ll often throw herself on the ground, deliberately deadweight. She walked up an incline but seemed oblivious to the step to the ground. Most importantly, Maggie will mostly toe walk.

Toe walking is what it sounds like: walking on your toes. When toddlers first learn how to walk, they toe walk because the muscles in their feet aren’t fully developed. Naturally, toddlers will outgrow this walking pattern and will in time press their heels down as they walk. If toe walking persists beyond toddler age, this could indicate problems including developmental delays and autism. Prolonged toe walking can also shorten the Achilles’ tendon.

In Maggie’s case, the measurements for the angle of Maggie’s ankle to flexed and pointed toes shows that her Achilles’ tendon is tight. Her toe walking leans her torso forward, which skews her balance. The seizures are disorienting enough to cause balance issues, but the toe walking worsens it, making her more susceptible to falls from normal play. Because her toe walking is likely associated with neurological and developmental delays, this adds non-idiopathic toe walking to Maggie’s ailments.

The solution, for now, will be a custom made brace for her foot that forces her foot to remain in a flexed position. Worn over the sock but under the shoe, this brace will facilitate a heel-toe gait pattern when Maggie walks. It’ll take three to four weeks after Maggie gets measured by a pediatric orthotist. I’ll need to make arrangements with her pediatrician for the prescription and with insurance to ensure coverage. Physical therapy is not recommended at this time. Maggie simply is not ready to follow directions necessary for PT to be successful. In six months, we can reevaluate whether Maggie is ready for PT.

In the meanwhile, she’s on the waitlist for speech and occupational, both skills with higher priority for her. My parent meeting with her ABA therapy team went wonderfully yesterday, as Maggie has shown tremendous progress on her goals. She is also receiving virtual behavioral therapy and these strategies have had a positive impact on Maggie’s progress.

What’s most difficult about raising a special needs child is the waiting. There is so much conscientious effort on the day-to-day, both at home and now at ABA therapy (which we call “school”), with every single routine. I’m impatient. I want her to be able to do all of the things that kids her age typically do, and we take the steps to help her get there. We make progress, but it’s so excruciatingly slow, like watching paint dry. We make appointments for specialists, waiting for weeks, who make referrals to other specialists, and wait even more weeks (or months). We do what we can, and we see improvements, slowly but surely. In the case of her toe walking brace, I’ll begin the administrative process of making phone calls, appointments, and more paperwork. I just hope that Maggie is able to get her brace soon, and I pray that this helps with her balance and gait.


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