Monday, April 22, 2013

Beginning Our Early Onset Scoliosis Journey

At Allyn's four-month well baby visit we mentioned to her doctor that we noticed a hump on her back. We were told it was not uncommon as some weird things still have not worked their way out from the way a baby is positioned in utero and we would examine it again at her six-month visit. 

As the next two months went by, she started sitting and we noticed the hump looked worse.  I was fine with mentioning to her pediatrician at her visit and not scheduling an appointment just to look at her back. I figured it was some wonky muscle that had developed as her muscle tone developed. 

We went to the six month visit and the doctor made a diagnosis of infant scoliosis.  And he acted like this wasn't something he had seen a lot of.  (And our doctor has been practicing for a long time).  He was going to get together paperwork to send to Arkansas Children's Hospital so we could see an pediatric orthopedist there. 

The process was very slow.  The whole time we were waiting Ben and I began researching her condition.  It turns out that early onset scoliosis is pretty rare.  And most cases self resolve.  Well there you go. So we'll just go and see this doctor and we'll monitor the condition and ta-da.  ACH had us go for x-rays at the end of February.  When I saw the films I wanted to vomit.  I had no idea how bad her curve was.  Children's called us 10 days later and set up an appointment for just over a week out.

We met with Dr. McCarthy at ACH. He measured her curve at 50 degrees.  He outlined a plan for Allyn to be casted for six weeks, then she would be braced for as long as we could and then she would have spinal surgery for rods to be placed in her back.  And could we be back in just over a week to start the process? 
(Here is the little peanut before we saw the doctor.  A smock?  Like she would have been so embarrassed to be in just a diaper).  Ben and I were floored.  We were optimistic this would just be a wait and see.  We had no clue it was so serious.  He outlined what complications could occur if we did nothing.  And we were scared.  But based on his recommendations, I knew this wasn't our doctor.  Now, if you come across this and wonder if this doctor is right for you, he may be.  He is an expert on scoliosis.  But from what I gather, the more traditional kind in adolescents.  He never told us how many babies he had treated.  We asked about casting and he said it was cruel.  Additionally, his nurse provided us with the ISOP website.  After reading testimonials on the website where nearly every success story was casting we decided to get a second opinion since this doctor did not do casting.
We made an appointment to see Dr. Hammerberg at Chicago Shriner's.  Ben spoke with his nurse on the phone and email and it was clear this is what they do.  So in mid-April Allyn had her first plane ride.
 My little peanut on her first plane ride.  Overall, I she did well.  Ben was able to travel up with the two of us.  I had her by myself for the return.  And as always, ORD was a complete nightmare because of weather related travel delays. 
 We arrived late and had dinner at Lou Malnati's.  Back in our Naperville days, Ben and I would often opt for a Chicago deep dish and a pitcher at Lou's.  This time around it was a salad, thin crust and water. 

And after a long day, this one passed out on the bed like a champ.  She was tired and we had a big day the next day.
We met with Dr. Hammerberg and his staff the next morning at 9 am.  He said he has had around 85 infant cases with the earliest being around 2005.  They do Mehta casting in series to get the curve under 10 degrees and then brace.  Obviously there are sometimes departures from this treatment method but this is where we begin.  Ben and I felt good that THIS IS WHAT THEY DO.  They help babies like my sweet little angel. 
I know we have a super long road ahead of us.  I'm trying to focus on her healing and not the limitations we will have as a result of her being in a plaster cast for up to the next three years.  And through the process I have found peace.  I know most of that has to do with all of the people that are praying for Allyn and our family. 
We will be going back to Chicago in early June to have Allyn's first cast put on. 

1 comment:

Jen said...

Hi Shelley! Your little girl is so cute and she will do awesome with her cast. The worst time is the time leading up to it because you don't know what to expect and the anticipation is enough to drive you nuts. Please feel free to email me ( any questions you have. Are you on the cast families facebook page yet? I can add you if you'd like, just send me an e-mail. There are so many other families out there going through the same thing and those moms & dads have been my lifeline through this.