I write this blog as we go through ET Mehta Casting with our daughter Olivia. The blog is intended to inform, possibly inspire, and raise awareness of Infantile Scoliosis and its treatment/cure. For more information please check out http://www.infantilescoliosis.org/
My name is Laura and I am starting this blog following my daughter Olivia's diagnosis of idiopathic infantile scoliosis. My little one is 15 months old. At 13 months my mother and I noticed that the back of her ribs felt funny. Her left side protruded out, while her right side was caved in. I looked it up and found the infantile scoliosis support page
. I instantly panicked and the next day made an appointment with the pediatrician. She noticed what we noticed and referred us to a specialist at Children's Hospital.
We got in there the following week. The orthopaedic specialist looked at her spine and said "this is usually one of those things that straighten out on their own, but we'll take an x-ray to check it out." We had the x-ray done and after checking it he said "Well I didn't expect that! I really thought she had maybe a 10 degree curve. She is at a 35 degree curve and is a perfect candidate for casting." Having seen the x-ray as it was being taken, and having done my research, I wasn't surprised.
What I wasn't ready for was what he said next "We're going to schedule an MRI to make sure there's nothing causing the curve before we proceed." Now this didn't occur to me. I hadn't read about cord tethering or brain stem issues. This frightened me.
On Friday we went in for her MRI. This was very stressful as this was her first time being sedated. The hospital was behind due to emergency procedures so we were in the prep room for 2 hours before she was taken in. The nurses were great and O was a real trooper when they put her IV in. I made sure not to cry until after the nurses were gone. I couldn't go into the MRI room where she was going to be sedated because of a previous eye injury I had obtained as a child (because of the magnets it was precautionary) so my husband went in with her. He read her a story and out she went. The nurses had to comment about how great my husband is, which they're right! Olivia continued to rally and did great with the sedation and came out of it fine.
The great news is that the scoliosis is officially idiopathic. The MRI came back clear. What's amazing is how one's perspective changes. I was initially dreading casting and now I welcome it over the alternative.
Casting you ask? What is that? Is it a brace? Well sort of. A brace only prevents the curve from progressing vs. the cast which will (hopefully) straighten the curve. A brace is removable, the cast is not. It is just like a cast one would have for a broken bone, just on her torso. I have included a picture to give you an idea of what it will look like.
So what does this all mean? Well, it means that she will be in a cast for 6+ months. The cast will be changed every two months for growth. She will be sedated for each casting because she must remain perfectly still. Once the cast is on there's no bathing (sponge baths are OK), no beach, no water, no sand. She must wear bibs to prevent wetness and crumbs from getting down the cast. Diapering may also have to change, but we'll work that out. I have started this blog to chronicle our experiences with this casting and how we "work out" the kinks.
She is scheduled to receive her first cast on July 23rd. Her first cast is considered to be an inpatient surgery so we will have to stay overnight. The doctors want to make sure she takes to the cast OK and that she can breathe properly etc. All the casts to follow will be day surgeries and she will be released.
Are we nervous? Of course! Are we prepared? Well, as prepared as we can be. We are all ready to look at this with a positive attitude and will do our best to laugh through the "kinks". Like when I thought to myself "what will she be for Halloween?" (when I came to the realization that all clothing will fit different) and a friend suggested "a Mummy?" And I giggled about it. I mean what else can you do right? It could always be much MUCH worse. As I sat in the lobby of Children's Hospital the day of the diagnosis pre-MRI I was looking around at the children and thinking to myself "this could be worse." We are blessed with what we have and are ready to face this head on.
For more information on the method of casting being used please go to the link above. My hope is that now, or years from now, someone going through what we're going through will find this blog and it will help them. More to come!
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