Unexpectedly, a routine doctor’s visit transformed into the beginning of a new journey, revealing both the hidden strength within our daughter and the intricate path of scoliosis management that lay ahead.

Yearly Physical with Pediatrician

Every parent’s hope is for their child to have a clean bill of health during yearly medical appointments. This year’s annual well visit with the doctor started like any other for my 6-year-old daughter, with an expectation of a routine check-up. However, the discovery of a 10-degree scoliosis curve during the exam set us on an unexpected journey. Little did we know that this would lead us into the complex and challenging world of scoliosis management, unveiling the remarkable resilience and adaptability of our young daughter.

It was that time of year again—our annual well visit with the doctor. I expected a quick check-up with no surprises. However, my 6-year-old daughter bent over, and the doctor measured her, revealing a 10-degree scoliosis curve, recommending we see an orthopedic specialist.

Scan for Scoliosis

Before her appointment with the orthopedic doctor, we needed to get a scan of her back. When we arrived, the technician remarked that she had never seen someone so young come in for a scan and hoped the adult machine would suffice. They proceeded with the scan. Upon looking at her scan, and my gut feeling was, “This looks more serious than just 10 degrees.”

Results for Scoliosis

The results came back swiftly: she has normal thoracic kyphosis, a thoracic dextro scoliosis with a Cobb angle of 47 degrees, and a lumbar levoscoliosis with a Cobb angle of 29 degrees.

Seeing a Specialist

The following week, she had her annual check-up with her trusted neurosurgeon. After looking at the scan, he referred us to a colleague, another neurosurgeon specializing in spinal issues.

During her first appointment, the new doctor discussed potential outcomes and treatment options. She then had a two-hour MRI under anesthesia to check for Chiari malformation or any other conditions that could be contributing to her scoliosis especially since she was so young. The diagnosis was solely scoliosis.

Wearing a Brace 18 Hours a Day and Weekly Physical Therapy

Given the severity of her condition, she began wearing a brace for 18 hours a day, accompanied by weekly 30 minute physical therapy appointments with nightly exercises at home. We also bought her a bar hold. She hangs from the bar hold a lot and loves it.

Initially, we thought she would wear the brace for half the school day, but she chose to wear it all day at school and have more time off at home. Though she feels embarrassed, she has confided in a few friends about it. We clean the brace with 70% Isopropyl Alcohol and cotton balls whenever we take it off.

6 Month Check Ups Because of Her Severity

Every six months, we return for an EOS scan to monitor her progress and hope to delay surgery. We’ve been informed that scoliosis can be genetic, as many families have seen half of their children affected. If her numbers increase by 10 degrees (over 50 degrees), surgery will become necessary.

Wearing The Brace

She manages to wear most of her clothes over the brace, sometimes opting for her older sister’s larger outfits. It can be tricky to use the bathroom with the brace on, so she wears her pants over it. A helpful tip from her brace doctor was marking the straps with numbers to indicate the correct order for putting it on, which also assists in ensuring it’s not accidentally worn upside down. An arrow indicating “up” was also added for clarity. I guess that’s why people like the patterns or a little sticker on the bottom to remind yourself which way it goes. She didn’t want a design because she didn’t want her brace to show through white shirts.

For comfort, we purchased five under shirts from her brace doctor. They are soft, seam-free, and perfect for her needs. While waiting for her brace to be made, we washed one shirt and had her wear it all day and to sleep, ensuring she had no allergic reactions. Finding suitable clothing for a 6-year-old can be quite the challenge!

We also bought her a bag from Higgy Bears to carry her brace and keep it clean when she takes it off.

Higgy Bear

To bring some joy during this challenging time, we discovered Higgy Bears (higgybears.com) at her brace doctor’s office. She ordered a small one (free except for shipping) along with a brace bag to protect her brace when she’s at school or out. She loves that she can take the bear’s brace on and off, just like her own. They even wear their braces together to bed! To make it special, she chose a fun pink pattern for her bear’s brace, while opting for a plain white one for herself to avoid visibility under her clothes, like her white polo shirt. We also bought her a Barbie doll with a similar S-curve and brace, but she prefers her bear.

Navigating the complexities of scoliosis with our daughter has been a journey filled with challenges and unexpected blessings. From learning how to manage her brace to finding comfort in her Higgy Bear, her strength and positivity have been nothing short of inspiring. While the road ahead most likely includes surgery, we remain hopeful and grateful for the support and resources available. More importantly, this journey has reinforced her courage and determination, reminding us daily that she is capable of overcoming whatever obstacles life may present.

Brace Shirt

This is the brace shirt she wears and loves. She has it in long and regular. Long is nice when she needs to take the brace off in public because it goes low.

Bar

Here is the bar hold we bought her and she is on it all the time: