Tomorrow, Dec 27th, marks one year since Dalton was diagnosed with Perthes. We had spent the better part of the month of December with him limping and complaining of leg pain on and off. He woke up with the croup two days after Christmas and the nurse noticed his limp. We were sent to the hospital for xrays and blood work and we knew w/in an hour or so what the problem was.
What a year it has been! I found an amazing online support group that was my absolute saving grace those first few weeks. The ladies were so helpful whenever I had any questions. I am forever thankful for these ladies and how much they have meant to me over this past year!
Those first few months we spent dealing with local doctors. One here in Greenville, one in Charleston, and one at Shriner's. They all were nice, seemed to know what they were talking about, but despite the fact that Dalton had VERY poor range of motion (ROM) and his hip was sublexing (coming out of socket), they wanted to just watch and wait because of his age. Age is a big factor when you deal with perthes. The younger the child (and Dalton was just 4), the better they fair...however, from everything I had learned online from my support group and other articles, age shouldn't be the main factor in determining how a child does. The age only matters as long as they have good ROM and the hip is contained.
At the urging of the ladies on the perthes board, I sent an email to Dr. Shawn Standard at the Rubin Institute for Advanced Orthopedics in Baltimore, MD. In just a matter of days he replied to say that doing nothing was not an option for us and that we needed to be seen immediately.
We saw Dr. Standard on May 7th for the first time. He gave us our options and we decided to start with physical therapy and stretching exercises. We have not allowed him to jump in almost a year. Our poor boy woke up 3-4 nights every single week between Christmas 2008 and the first of August 2008! It was truly a miserable time for us. We tried everything from valium to loritab and nothing really every stopped the leg pain. One day it just stopped.
We have been to Baltimore to see Dr. Standard three times and the past two times he has allowed us to have xrays taken here in SC and then we just fed ex them to him and he advises us on what to do. Right now the stretching seems to be keeing his ROM in normal ranges. When we first started this journey his ROM was horrible in every single way it could be measured. At times he couldn't even pedal is bike.
Today we are just taking things one day at a time, one set of xrays at a time. His last xrays didn't look any worse and as soon as Dr. Standard is back from the holidays I am going to fed ex the xrays up there so he can see if he is seeing any regrowth yet. We will have more xrays the middle of January and we'll go from there, yet again.
Hopefully all Dalton will ever need is just stretching to maintain his ROM..but we know all too well that we could be facing surgery and/or bracing at some point in the future. We will continue to hope and pray for the best outcome for Dalton, regardless of what we might have to endure to get there.
Thank you so much for all your love and prayers and support this past year! We are forever thankful for everything!