Casting for Infantile Scoliosis: This isn't your momma's Risser.

Casting for Infantile Scoliosis: This isn't your momma's Risser.

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~

Catie(scoliosis-sucks) D.

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    I appreciate your recognition of choosing the more conservative options first, and hoping to avoid the more invasive (surgery) for treating scoliosis. So thanks for your blog, I've enjoyed reading a couple different post throughout the past months.
    I wanted to ask you about your son with regard to the causal factors for his scoliosis. Have you ever had him checked by a CLEAR Scoliosis Institute doctor? The CLEAR institute has determined that most of the cause for AIS (adolescent) is due to upper cervical (neck) problems, ultimately the loss of the normal lordotic curves in the neck and low back. This is nearly always the case with AIS, but I wasn't sure for infantile IS. Even the slightest pressure on the brainstem damages the spinal tracts that deal with proprioception/balance/etc... that drive the abnormal curves in the spine.

    I apologize that I haven't read all of your posts, so I don't know for sure if you discussed past treatments, etc.

    Blessings to you and your family.

    Nick

  • In reply to nbdub:

    Thank you for your comment. I have read research and met families who have worked with the Clear Institute. With our child his diagnosis came at 10 months of age, 67 degrees low thoracic and lumbar curve. With Infantile Scoliosis the progressive curves are often accompanied with significant rotation to the spine. Without addressing rotation, the spine will often fail to ever correct non-surgically. The keys to Cotrel and Morels casting is to correct 3 dimensionally using both straightening and derotation of the spine and casting it as you would nurture a small tree. With Min Mehta the same theory was then applied to Infantile Scoliosis by showing best results if caught early.

    I wish you continued success with the Clear Program. I would strongly advise families in the Chicago area to consult with Dr. Hammerberg, Spine/Scoliosis expert, at Chicago Shriners Hospital before undergoing any treatment. There are limitations to any treatment. Scoliosis that is allowed to progress endangers a childs life. As no treatment is one size fits all it is imperitive to have an expert available to advise with each treatment option.

  • Hi Catie!

    While I am in Boston, this is the best post I have found regarding casting in progressive infantile scoliosis...I like how real it is and I share the same outlook. With that said...My daughter is four years old, three weeks out from her second cast. Her rotation and curve very close to your sons. Our doctor had us wait from first xray until a second xray four months later to document progression. We then had a sedated mri about a month later to rule out deformities...she wore the brace for a year right after results of the mri came back. While in the brace 23 hours a day, she still progressed quite rapidly...then we entered the tunnel of SURGERY SURGERY SURGERY...this was roughly over two appointments. On our next appointment, we met with another dr and she stated it was in our best interest to cast right away. This was very new to me and once I learned all I could, I booked the o.r. the following week. I simply cannot understand why I wasn't presented with this option almost 30 degrees before. I would like to join you in the effort to push drs. to present this option early on. While I am not sure if the casting will help my daughter, your post gives me hope and I pray every day that we didn't wait too long. My two questions to you after so many casts...

    1. On surgery day, I go into the room and hold the mask on my daughters face to help her go to sleep. Assuming you do this with your son, how do you cope with it, does it ever get any easier? (When I walked out of the room after the first time, I broke down - hysterically crying. I like to think I am SO strong for her every day, but that was just too much.)

    2. Have you had any issues with potty training? My daughter is on exlax and muralax to keep her regular. The urology seems to think her incontinence is caused by fecal pressure on the bladder. My daughter will start peeing and swear that she is not going to the bathroom until she physically sees it. I know this is a shot in the dark, but her ortho dr. doesn't seem to think it is related to the scoliosis, yet I still have no definitive reason why...

    Thank you SO much for sharing your story, bless you.

    Jamielee (aka Maddys Mom)

  • In reply to maddysmum:

    Jamielee I am so sorry it has taken me so long to get back with you! We are at Shriners Hospital for Children Chicago. They use Versed as a pre-medication prior to casting. With the versed, the dosage is very low and fast acting. It causes an amnesia effect and relaxes William before they take him to the OR. We are with him in Pre-op but not allowed to enter the OR. William has fear of the yucky taste of the medicine, but no anxiety about casting at all. He has no memory of the mask and when he wakes up immediately asks for MOMMY!!!!! They always come and get us and we are able to calm him down after.

    Your second question...William had severe constipation in cast. We were very familiar with Miralax. He did eventually potty train. About 3 1/2 was his magic number. Now he seems to be the super potty man! My 12 year old was 7 before he stopped having accidents and wetting the bed, William has slept in underwear since day one!

    It is an absolute shame these families aren't given all the options in terms of their kids care. I cringe to think where we would be had we not sought out casting on our own. William was turned away and we were told he would grow out of a 70 degree curve. It is NEGLIGENCE in my opinion.

    We are sending BIG HUGS to you and your beautiful city! We lived in Cataumet, MA and I went to school in West Falmouth. I miss the great state!

    My personal email is cdiefenbaugh.ua@gmail.com. We also have a family support forum on facebook if you are interested in connecting with other families! Hugs and Hope my new friend.

  • Hello there- I know this blog post is a bit old but I'm hoping I can still reach you. My 14 month old daughter was diagnosed with congenital scoliosis at 5 months old. Congenital is very different from other forms of infantile or idiopathic scoliosis. She has two discs that did not form properly and she will have to have surgery. Our goal is to wait to do surgery till she's at least 3 yrs old when her bones will be bigger and stronger. However her curve is progressing too fast. As a way to try and slow the progression she has recently been put in a cast. The goal is continual casting, every 2 months, till she's ready for surgery. We are three weeks in to our 1st cast. I'm curious, what other care did you do to try and avoid skin problems? My daughter has the special shirt on under her cast. Its only 3 weeks in and her shirt is dirty and just seems like it needs to be switched out. Her cast doesn't go over her shoulders. I've seen YouTube videos of parents who change a shirt underneath, I'm pretty sure we could do it but of course our doctor didn't say thing about it and we didn't ask at the time. We're you able to do that? If not how was the shirt by the end of each cast? Out doctor also has us rub aquaphor under her cast on her skin as much as we can, squeezing under the cast. I'm concerned about possible skin problems, she's a toddler and keeping crumbs and things away is so hard.

    I'm only 3 weeks in and I already miss rubbing her back, feeling her body mold to mine. I know it's for the best but it is hard and a long road ahead.

    How is your child doing now?

    Thank you for your time.

    Jackie

  • In reply to jcasper:

    Hi Jackie! I am so excited you found our blog. I am going to send you an email and try to put you in touch with more families traveling the same path as your family. William is on his final cast. 4 years, 17 casts and we are starting the next step in our journey. William's scoliosis has been found to be congenital as well. In our 4 years we have gained 4 years free from surgical intervention, 45 degrees correction and a community of friends traveling this journey with us. You are not alone! Can't wait to connect.

    Catie D.

  • Cathie,

    I found this post while searching the web for info about serial casting for scoliosis. I have a 2 year old son with congenital scoliosis. He just had his first surgery in Sept in St Louis. We knew casting wouldn't be an option for us early on until we had this first surgery to remove a hemivertebrae in his lumbar spine. During out first follow up this Dec we were told he would need mult other surgeries but of course they wanted him older. I also am frustrated because we had to bring up serial casting as an option to try before other surgeries. We will see someone in St Louis regarding this but was wanting another opinion that wasn't so closely attached to our surgeon. We live in KS but I am originally from Chicago and still have family there. My husband and I had heard there was someone who did it out of Shrinners but we are having a horrible time finding the names of any doctors who do the casting besides Cincinnati, OH. We would be willing to travel where ever we had to but Chicago would be nice because we could stay with family. I have never followed a blog before so I'm hoping I know how to get your reply. Can you please let me know who your doctor is? Also, I'm assuming you can't get your sons cast wet. How do you handle bathing and summers with swimming? Thank you so much for posting this. It's so overwhelming to think of the long road we have ahead of us but we will do anything to avoid other spinal surgeries if we can. I'm so happy to read that you are happy with your sons progress and would do it all over again if you had to.

    Candace

  • In reply to Clhaw820:

    Sorry about your name posting incorrectly

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