Tuesday, June 10, 2014

Scoliosis and Allyn's story

June is National Scoliosis month and one of my good friends Shelley not only has scoliosis but her daughter has a more severe childhood case.  I've watched Shelley as she walks through this with Allyn with so much love and patience and determination to get her the best treatments.  Shelley asked me if she could do a guest post in hopes that anyone reading this who might be on this road or just got a diagnosis and might need encouragement or support or information.  I have no doubt there are several of you who this affects. Or you may have a friend you can point here who needs to read this.

Thanks to Kelly's Korner Blog for giving me the opportunity to share a little with you about scoliosis.  I'm sure almost everyone has heard of scoliosis and there are a lot of people out there that know (or know of) someone with it.  Well, June is National Scoliosis Awareness Month.  It's kind of an important month in our home.  Why?  Well, 50% of my household has scoliosis.  I have the more traditional kind that begins in adolescence.  I honestly have no idea what degree my curve is currently at and the only time it has ever caused me any discomfort is during each of my pregnancies (but isn't every expectant mother uncomfortable in those last weeks?).  But more importantly, my daughter has early onset scoliosis.  It's something I never even knew existed until she was diagnosed by our pediatrician when she was six months old.  I guess when you get down to it, mechanically it's the same as the kind you have probably heard about.  Only hers progressed a lot faster and because of that it has the potential to cause a lot more problems now and as she gets older.  So these days I'm kind of invested in curvy spines.

This is Allyn.

Image courtesy of Bethany Blair Photography

She was born past her due date in the sweltering hot summer.  But by all accounts, she was a totally healthy baby even though I had polyhydramnios throughout my pregnancy.  Looking back at pictures now, I can almost notice the scoliosis from the beginning.  In almost all of her pictures she has asymmetry through her torso.  We also noticed when we picked her up that one of her ribs seemed to flare out at the bottom.  Our pediatrician said that there can be some intrauterine molding issues that take a couple of months to work out.  She also had reflux, but our son had that too.  So I never really stressed too much about anything.  Around five months she started sitting.  And during that time my husband and I noticed that it looked like she had really tight muscles on one side of her back.  We had her sixth month well child visit scheduled so I just thought I would ask about it then.  Because I am that person that imagines worst case scenario and it turns out to be nothing.  And I figured this was nothing.  

At our six-month checkup, her doctor took a look at her and diagnosed her with "infantile scoliosis."  It was pretty clear that this wasn't something he had seen a lot of during his couple of decades of practice.  He was going to refer us to our state's children's hospital.  But he went on to say that most cases are self-resolving.  Within a couple of weeks we were asked to take her to the hospital to get x-rays to bring with us to our appointment with the orthopedic specialist.  I will never forget how much my heart broke when I saw the films.  Her curve was bad.  And my heart was breaking.  Just a couple of days later we got a call from the specialist that they needed to see us within the next ten days.  We went to the appointment in March of 2013 and thought he was going to tell us it was going to get better and there were some exercises we could do with her to make the scoliosis go away.  But he told us her curve was somewhere around 50 degrees.  And he wanted to sign us up for a research study.  And could we be back in two weeks to put her in a Risser cast and then we would brace for as long as we could and if and when that stopped the curve from progressing, she would have rods put in her back.  We mentioned we had a trip to the beach planned and would she be okay to go on that.  He said not in a cast so they scheduled an appointment for May 18, 2013 for her to be put in a Risser cast for six weeks.  My husband and I both cried on the way home from that trip.  

This picture was taken on our first orthopedic visit.

Ironically at that visit his nurse provided us with some printed materials from the Infantile Scoliosis Outreach Program.  We had asked the doctor about serial casting for the treatment of scoliosis and he said he didn't do that because it was cruel.  EVERYTHING we read on the ISOP webpage promoted casting as the preferred treatment method for Early Onset Scoliosis (EOS).  We knew that this wasn't our doctor.  But we didn't know much else.  It was hard to find information about casting and places where we could receive treatment. I reached out to a college classmate who is somewhere in the process of becoming and orthopedic surgeon and focused on scoliosis.  He told me the names of a couple of doctors to reach out to.  Originally we had decided on one location on the East Coast for a second opinion.  We were also going to try and get into a facility in the same family of hospitals in the Chicago area.  Hospital protocol would only allow us to visit one of the facilities, so we chose the Chicago location.  

We journeyed to Chicago in mid-April of 2013.  We visited with her doctor and he examined her x-rays from February.  He measured her curve closer to 40 degrees.  He said we should begin casting because in addition to the curve she also had a significant amount of rotation.  We mentioned that we had a trip to the beach planned in early May and his staff told us to enjoy our vacation and they would see us in June to apply her first Mehta-Cotrel cast.  She would be just shy of ten months old.  I will never forget how bad her back looked last May.  The hunchback was so big.  And the curve was so prominent.  And it was scary how quickly it got so bad.

Image courtesy of Bethany Blair Photography
This is one of those images that I just want to cry when I see.  You can see the curve, but this is how evident the rotation had become just before we started casting. 

Here you can see how her right rib cage is bulging.  The curve was forcing rotation and quickly deforming her entire ribcage.

On June 4, 2013 Allyn had her first cast applied.  The weeks leading up to it were very scary.  She had to go under anesthesia to have the cast applied.  She had been sick just before the cast and had an x-ray taken with her hands extended above her head to make sure they could clearly see her lungs so we didn't really have an accurate degree of curvature for just how bad her curve was.  But it was probably over 60 degrees.  She was first on the outpatient surgery board that day.  Our doctor typically casts four or five kids a couple of times each week. She went back into the surgery area from pre-op and my heart broke a little.  I felt so guilty for doing this to my tiny little girl.  Her doctor was able to get her spine down to about 25 degrees in cast.  And she wasn't too upset considering her entire torso was covered in two pounds of plaster.

My little dolly after she had received her first cast.  

The first cast came and went, and the second, third, fourth and fifth.  Each one has gotten a little easier.  Sponge baths are still iffy and hair washing is a complete nightmare.  She really wants to take baths now, but we really enjoy a week out and take several baths every single day.  And we go shirtless so I can love on her squishy little belly.  And I let her feed herself and make messes and dump food on her head.  That week out is such a treat to us and reminds me to not ever take the little things with your littles for granted.  She is now in her sixth cast.  Following Cast #5 she was down to about 42 degrees out of cast.  So the casting is working on lessening the degree of her scoliosis.  And when she is out of cast her hunchback looks so much better and I am beginning to notice more symmetry throughout her entire torso.  

This picture was taken just a couple of hours after we removed her fifth cast and after we gave her a long warm bath.

This x-ray was taken after she had been out of Cast #5 for one week.
We will go back in mid-June to have her seventh cast applied.  And we will have been casting for an entire year.  And I'm just so thankful for all of the people placed in our path so we could try a gentle method to healing her.  And there is still a possibility that she won't be cured.  And she may still need rods or spinal fusion.  But casting is giving us time so that we don't have to make that decision too soon and we give her ribs and lungs time to grow and develop.

Well, that's our story.  Short and kind of sweet.  But the reason I asked Kelly if she would let me hijack her blog to do this post was to give her readers information on a condition that will probably affect someone they know.  Scoliosis can affect anyone.  It can affect anyone of any age though it is most common in adolescents.
There are a couple of things that you can look for when you are examining at home.  The most common way is the Adam's Forward Bend Test.  You can also check for asymmetry in the shoulders, waist, hips or head leaning to one side.  In babies and smaller children you may also notice a rib hump from the spine starting rotate, asymmetry in the chest wall, or a sacral dimple.  Often times infants with the condition also present acid reflux and/or developmental delays.

The most important thing to do when you suspect you or your child has scoliosis is to seek treatment.  Talk with your doctor or your child's pediatrician.  Especially as a parent, you know when something isn't right.  Sometimes you will have to fight tooth and nail for a diagnosis, but do it.  Early detection and early treatment are so very important.  Scoliosis can be trivialized because it's "just" a curvy back.  But that curve can cause lifelong complications such as pain and reduced lung capacity to the point where it can impact even the most mundane daily activities.  Additionally, left untreated it can lead to serious physical deformities.  Casting can be very effective for scoliosis and kyphosis treatment in very young children.  And in older children it can help delay major and frequent surgeries.  For adolescents with scoliosis, some information is suggesting that there are exercises that may slow curve progression in some patients.  And of course there are the more common and well-known treatments of bracing, rods and spinal fusion.  But you can't get the right treatment if you aren't with the right doctor.  

If you need more information for scoliosis and treatment, some sites I have found very useful are:
General Scoliosis Information:  Scoliosis Research Society  
Early Onset Scoliosis:  The Infantile Scoliosis Outreach Program 
A Great Site for Perspective:  SHIFTScoliosis 

Additionally, there are many support groups on social media websites.  These have been invaluable to me.  When I have a question or need to vent or just not feel so alone, it's great to hop online and see that someone somewhere has gone through the exact same thing and has something to share.  

And if you have any questions or need me to help you find someone that can help you find answers, I (Shelley) can be reached at snscarbrough(at)gmail(dot)com.

blog comments powered by Disqus