So the blog I have been working on all week obviously wasn't the one meant for this week. No matter how many times I have edited, re-written or obsessed it just didn't have the same gusto the topic deserved. Quite possibly I was holding back, not addressing what really needed to be addressed. That little thorn in my side will sit in my drafts for while longer until I can give it the attention it deserves or until I can find the drive I need for it to make an impact.
A couple of weeks ago I lamented about why when Veptr surgery was discussed on National TV was casting not at least introduced as a non-surgical option for families of infants and toddlers. It seems so obvious a choice when I am surrounded by families who have been given such immense hope through casting. This week I was reminded how few Orthopedic surgeons present this as an option. De-rotational Casting a.k.a. Mehta Casting a.k.a. EDF casting was given such a bad name by its earlier counterpart the Risser Cast. Times have changed and the cast has morphed. It's application has been revised, structural components of the past have been modified to avoid skin breakdown & deformity's. They are no longer straigtening the spine and casting it straight, now they are correcting rotation as well as straightening. With our son once the rotation was addressed the spine started to hold the gentle correction that had been applied.
It baffles my mind that families are still being told don't rush into this decision. What should they wait for? Would correcting a 77 degree spine with casting be a better decision than tackling a 48 degree spine? If a child MRI of the cervical, thoracic and lumbar spine ruled out any congenital abnormalities is it really necessary for the child to postpone casting to undergo further scans and genetic testing to find our why their spine is curved? We have had children undergo further testing while still addressing treating their spines. As a lay person, I thought that was the very meaning of idiopathic. As more and more articles are slowly being published showing Serial Derotational Casting as the first line of defense in the battle against infantile scoliosis why are Ortho's still resistant to presenting this as an option?
I understand Surgery for a surgeon may be sexy. What you are able to do to our kids spine using a scalpel, some hardware, etc... may truly be extraordinary. You know what I would find even sexier...do the same thing slowly over time and never cut my kid. Wow there is a concept. A surgeon offering an option that will have a similar end outcome and never use a scalpel. No, I don't think surgeons want to cut kids but ask yourself as you are hesitant to mention a non-surgical correction what will happen to most of these kids if treated only with bracing or if we wait and watch? Where is their treatment going to eventually lead? We asked that question and our answer was clear: Most of these cases self-resolve (if they are under 25 degrees with no rotation), if your child's spine progresses we will be able to brace him in hopes of preventing the curve from increasing, surgery will be an option but not until he is maybe 4 years old. The Veptr is really wonderful and will allow him to grow normally until he can be permanently stabilized when he is a teenager.
To us, this scenario wasn't an option we were willing to take until we had tried everything else.
Our story is far from over. This is how it has went so far with casting... William had an MRI to rule out congenital abnormalities October of 2009 (10 months of age) , one week later he was scheduled in an OR at Chicago Shriner's Hospital for his first cast. He started at near 70 degrees and came out in cast number 1 with no rotation and was holding in cast at 25 degrees. We are nearly 3 years into casting and William just a week out of cast number 11. His spine appears to be holding as straight as we have ever seen out of cast. He will have x-rays on Monday and then enter the OR for cast number 12. He has a slight rib flair on one side which is minimal compared to the deformities he had prior to casting. We have had skin breakdown in 2 casts. One was caused by cedar mulch wedged in the cast, the second was more of a rub on his hip that had formed a blister. William was watched like a hawk on playgrounds with mulch after the first incident and we have started checking his edges since the second. Salt Lake City uses a knit rite shirt that uses silver thread. This shirt is designed to cut down on yeast and bacteria which are common to creep around the cast openings in the summer.
I have always said each family has to make the decision of which care is best for their child on their own. I don't know your families circumstance nor can I tell you what is the right or wrong decision for your child. I do believe it is not an informed decision if you have not at least been presented with ALL the options. I implore any and all Ortho's and Pediatrician's who are reading this to learn more, research more, present casting as an option. Parents living the casting life may be the best resource for other families considering this option. Even our hospital, Chicago Shriner's, will refer patients to other families for the day to day questions regarding life in cast. After nearly 3 years of casting, with all the knowledge I have gained through the process I would still choose this option. When speaking with new families I always tell them they are the advocates for their child. We are here to support whichever option you choose. Judgement is not part of our plan.
To all the LCC families nationwide facing a new cast this week we are thinking of you! Chicago, Cincy, Greenville, & PA will be greeting our friends this week for new casts. For some it will be their first for others it will hopefully be their last. For us it will be #12 and for the chance to stay in this game we are grateful!
Until next time, keep it curvy~