Diagnosis Wait and Watch: Meet Brayden, He's not waiting anymore!

Diagnosis Wait and Watch: Meet Brayden, He's not waiting anymore!
Brayden is in cast #3! He is treated by Dr. Peter Sturm, Cincinnati Childrens Memorial Crawford Spine Center.

Brayden’s Story

We were so excited when we found out we were pregnant with our first child!

On Tuesday, October 5th, 2010, Brayden Richard was born via c-section at 11:33 am. He came out screaming and hasn’t stopped talking since. 

After his 2nd appointment with the pediatrician we were off to the local children’s hospital for testing when Brayden was 10 days old. He was having troubles keeping food down and I was breastfeeding at the time. He was diagnosed with reflux. We ended up seeing a gastroenterologist and had a couple more tests run to make sure there was not anything else wrong. Everything led us back to Brayden having reflux.

Being first time parents we were worried about our son getting enough nutrients after being diagnosed with reflux. Little did we know this was just the beginning of what was yet to come.

Between the age of 3 and 4 months old, Brayden has been in the hospital with bronchiolitis twice and was also diagnosed with torticollis. We were becoming very familiar where things were located at our local hospital. Our pediatrician recommended physical therapy so that’s what we did.

At 5-month’s old, we noticed a rib hump on his chest. We asked his pediatrician about it. He said it was probably extra cartilage and to monitor it for a few weeks. If it got worse we needed to call and he would get us in for an X-ray. It was not any better and seemed to be getting worse so we went for the X-ray. Our pediatrician called with the results and we were not prepared for what we were about to hear. Honestly, can anyone ever be prepared for hearing something is wrong with your child?

We got in to see the Pediatric Orthopedic Surgeon within a couple of weeks. He confirmed the diagnosis of Progressive Infantile Scoliosis (PIS). He had convinced us that in a lot of cases, this corrects itself and to continue physical therapy and come back in 4 months and have x-rays taken again. You know…the watch and wait game? So we played it. He seemed to be doing better at 10 months when x-rays were taken. He said we need to wait until Brayden is walking to get a “true” reading on the x-ray and this would give a better idea if his PIS was correcting itself or getting worse. So we continued physical therapy and played the watch and wait game again.

Brayden began to walk at 12 months old and at 14-months old, we had x-rays taken again. We definitely were not prepared for what we were about to hear. The physical therapy prescribed was not helping Brayden and his curve was now at 42 degrees. The doctor recommended casting but had only had one other case that was casted in a Risser cast as he was not familiar with Early Treatment with Mehta’s specialized EDF casting techniques. Brayden’s doctor advised us to get an MRI to rule out any other issues that may be causing his PIS. He also recommended that we get a second opinion. He was very helpful and answered all our questions.

Within a couple of weeks, Brayden had an MRI done. We were not anticipating anything to unusual to come from this but to confirm his PIS. Nope, we were wrong again. He does not have a chiari malformation yet but could turn into one. Luckily this was not anything to be worried about at the moment and was not causing his PIS. We would just need to do routine MRIs every so often to make sure it is not getting worse.

After this news, we spent the next couple of days researching for other options for our son. We found Dr. Sturm at Cincinnati Children’s Hospital Medical Center (CCHMC) and this was 2 hour away from our home. After seeing Dr. Sturm, he confirmed his curve was 42 degrees as of 12/13/11. He said Brayden was a perfect candidate for the ET with Mehta’s specialized casting. We were able to get in for casting the next week. It only took him a short while to figure out how to get around with it on. He continued to sleep on his belly as he always had and nothing seemed to bother him.

We got some correction with the first cast and the second we are holding steady. Brayden is down from 42 degrees to 31 degrees and in his 3rd cast currently. We are looking forward to getting it off soon and having some fun in the water and lots of squishy hugs.

The last couple of years have been bumpy but we have met many friends along this same path and together we will fight PIS with all we are and all we have!

A huge thank you to Eryn & Curt, Brayden's Super Parents! We are so blessed to have you both on our journey!

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  • I was interested to see your story about Brayden. My daughter, Addelynn, who just turned 1 year old has to be placed in a cast in January. Her curve is at 52% now. When we were told she had to be placed in a cast, the doctor said "turtle shell". We were so worked up about the news that we didn't even ask what the cast is going to look like. And I just keep wondering how its going to affect her and hope that she'll get used to it quickly and that it won't affect her personality.

  • In reply to #worriedmom:

    Dear Worried Mom,
    Addelyn will bounce back, I promise. William started casting at 10 months of age with a near 70 degree curve. The first few casts were definitely an adjustment for both of us. He bounced back faster than I ever did. He relearned to crawl then walk and honestly would take a week or so of being miserable before he was back to his happy self. We casted for 4 years solid and 17 casts. We recently moved to a brace when his progress hit a stall for 2 years straight. Our first week in the brace, my now vibrant 4 year old insisted he wanted his cast back. The beginning is scary, we need to look to our kids for the encouragement to move forward. I learned quickly he would react to how I was reacting. My husband was the king of don't feel sorry for him, this is his HOPE. We are sending prayers for your family. Reach out anytime you need a hand or friendly advice. cdiefenbaugh.ua@gmail.com

    Hugs and HOPE~ Catie D.

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