Jess didn’t just have her own way of talking, she also had her own way of walking. When she was younger, she’d walk with a high arm guard position and had an ataxic gait. It was by sheer force and focused determination that she could get from point “A” to point “B”. If all went according to her calculations, she could prevent herself from falling only if she could build enough forward momentum.
When I look back at early photos, her foot and ankle are straight. By the age of seven, her right foot turned in and she had developed a high arch. She rolled her ankle to compensate for these changes. It was recommended that Jess see an orthopedic doctor that could customize a brace which would maintain her foot in the correct position. Jess had seen doctors in private practice and we also went to Shriner’s Hospital in Philadelphia.
To make a custom orthodic, a cast was made of her foot. The AFO was made of hard plastic which was then strapped on with velcro around her calf and foot. We replaced the AFO as she grew. Over time it became obvious that the braces were not effective. We were told that surgery was our only course, a tendon transfer. Unfortunately, none of these treatments were successful.
During this time, we also attempted a series of botox shots in her calf to reduce the tightness and to help relax the tendon. All I can say was this was a PAINFUL procedure. The doctor that administered the shots turned to me and said, “she is the strongest 11-year old I have ever met!”. I was never very comfortable with this therapy (though I did ask that any residue be applied to the crows feet around my eyes). After witnessing how painful it was, we stopped. Against the doctor’s and school’s advice, we decided that she would no longer wear the brace.
We did all of the above so Jess could walk without pain or discomfort. Jess still has an awkward gait. Her arms are starting to swing more naturally by her side, but none of this is due to the therapies and interventions that we had done. The lasting end result from all of this is that Jess now has two different sized feet. Her right foot was stunted and not by a little bit, it is one whole size smaller. We are now revisiting an orthopedic shoe store that happens to be local. We have two different styles of sneakers that we are waiting to try. They will not use a hard orthotic, but they may do a little padding to the right shoe to keep her foot from swimming.
Why is it that we automatically assume that doctors are the authority? Why did not one doctor tell us that permanent damage could be done? Why did I not ask for data that supported the treatment? For all of those that wore these before, how are they doing now? When the doctors saw that this treatment was not working, why did they continue? Looking back, this whole process reminds me of how the Chinese had bound women’s feet. They did this to stunt growth. Small feet were considered beautiful. In essence, this is what happened to Jess’s right foot except for the interventions that were done left her worse off than if we had done nothing.
One person’s experience does not make them an authority and I am not claiming to be an authority. However, I do feel that this is just another area where we need to question. Just because it has always been done this way, doesn’t mean it is right. Now, whenever I see hard plastic inserts, I cringe**. Hindsight being 20/20, Jess would have probably been better served by a well-fitted sneaker that had a soft insert to support her high arch. She also needed a shoe that would support her ankle. Now that I think of it, a good pair of paddock boots probably would have done the job. I might just get her a pair. They will come in handy when she goes to the barn.
Anyhow, I think I will add this to the long list, “if I only knew then what I know now”.
** Apparently, there are doctors that support my thoughts.
This is a close-up of what Jess wore. Though it did prevent her ankle from rolling, it did not correct her foot but permanently disfigured it.
**”An ankle-foot orthosis is an orthotic device or brace that surrounds the ankle and at least part of the foot. AFOs are designed to control position and motion of the ankle, compensate for weakness, or correct deformities.
AFOs are most commonly used in the treatment of disorders affecting muscle function like that caused by stroke, spinal cord injury, muscular dystrophy, cerebral palsy, polio, multiple sclerosis and diabetic peripheral neuropathy. They may be used to support weak limbs, position a limb into a normal position, or immobilize the ankle and lower leg in the presence of arthritis or fracture.”
**update. In 2016, Jess was starting to roll her ankle more and was falling down. I took her to our Chiropractor and said “I know this is neurological…” and he felt her ankle turn had more to do with how she carried herself. Jess was tipping forward as she walked. The turning was caused by her upper body alignment. Within a month of treatment, she stopped falling. was not leaning forward as she walked and her ankle improved.
I asked the Chiro what do I share with other families. What should they look for when seeking out this type of treatment. He said to make sure the Chiro was trained in pediatrics and to be wary of those that rely on gadgets and machines to provide therapy.
Over the years, I had tried Chiro’s and pretty much felt they were quacks that are until I found this doctor. I was the first to visit him, then the husband. We were the guinea pigs. These adjustments made Jess feel better. She doesn’t hesitate to stand by the table (he begins with the patient standing and then has the table to down). Jess would not be so eager if this were painful. She also realizes that this is helping her.
Jess is not seeing the Chiro now, however, will be taking her back for preventative care.