Car Seat Safety for Kids in Scoliosis Casts and Braces

The following post was originally published on April 23, 2008.  I've pulled it up to share again because the tips on safety for children in scoliosis casts and braces still apply, and may help you if your child's cast or brace goes so low over the hips that your child can't sit comfortably in your current car seat.

Car Seat Update: We Have Acheived Safety!

The Dude and I went to the county car seat inspection event today, where a certified inspector from the state worked with us. She is the state expert on special-needs seats, in fact.

The first bit of good news is that I can quit banging my head against the wall on getting insurance coverage for a special-needs car seat! The health department has loaners for people who require special-needs car seats. I never knew this until I called to ask! They had two available for us to try.

But we never even got to look at them.

This is the second bit of good news: The inspector said our current seat is safer for The Dude than any special-needs seat would be.

The way she explained it is that all the special-needs seats have to compromise on some safety aspects to achieve accommodations compared to regular seats, so if a regular seat will work, it would be safer for the child than a special-needs seat.

I'm sure the special-needs seats are not UNsafe, but I suppose they were tested on crash dummies wearing the casts/braces for which they are designed. Maybe kids with different configurations would not be as safe as those with the intended casts/braces. Currently, there are no seats designed for Mehta casts.

But, she said the folded towel under The Dude's rear (which we'd placed there to increase the angle of his sitting posture due to pressure against his legs from the cast) is FINE! And she added one behind his back, too, to eliminate a small gap between him and the seat. She said these make him safe and secure, more so than a special-needs seat would do. (I feel so validated!)

She also made certain the car seat was properly installed in the car and gave me some tips on getting the harness to stay in place on the cast's shoulder straps.

And she also said you do not need an expensive car seat to have a safe car seat.

I'd expressed some reservations over this seat since it was somewhat inexpensive compared with many others, and one which was purchased in a moment of desperate need rather than after copious research. But she said many times that she really liked this seat, that it is very safe, that it works very well for The Dude, that it fits perfectly in my vehicle. (Any more validation, and I might begin to think I have this mothering thing down pat!)

Now, I must admit I am slightly chagrined that the inspector had to correct the installation of The Dude's car seat. See, The Dude's Daddy and I are quite capable of reading manuals, following instructions, and installing car seats. Or so we thought. But it really is true that 7 out of 10 kids in safety seats are improperly restrained. Really. So yours is more than likely one of them. (What do you want to bet those other 3 have been to see the certified inspectors?)

I cannot express how glad I am to have gone today. I am a new convert: I believe everyone should have their car seat inspected with their child in it. So go do it now. Your county health department is where to start calling.

Recipe for a Scoliosis Notebook

The Scoliosis Notebook can be as simple or as fancy as you please--what matters is the information you've got at a glance.

I'm a very simple kind of organizer, so my notebook is not fancy at all.  Feel free to create one just like it, or to design something artistic, whatever works for you.

Ingredients:

• Three-ring binder -- 1" is good to start with.  It should last some years.  You may never need a larger one, but if you do, it's simple to upgrade.
• Page dividers for 4 or 5 sections, labeled:
• Providers
• Measurements
• X-rays
• Photos
• Physical Therapy (or Bodywork) if your child does either of these
• Pocket to hold recent CDs of x-rays -- this can be the pocket on the flap of the binder or an insert that goes in the binder.  After eight years (so far) of scoliosis, we have a stack of CDs several inches tall.  I don't carry them all in the notebook, only the most recent couple of years' worth.  
• Sheet protectors for photo pages -- acid-free is probably advisable
• 8.5 x 11" cardstock for photo pages
• Double-sided tape for photo pages (I use stuff made for scrapbooking--it's repositionable and easy to apply.)
• Printer paper and ink

Do:

1.  Label your binder.  Mine is called "Scoliosis Notebook."  (Told you it was simple.)

2.  Create a sheet with contact information for all your scoliosis care providers.  Put this sheet behind the divider labeled "Providers."  Include:

• Your child's pediatrician
• All orthopedic surgeons who have seen your child
• All orthotists who have made a brace for your child
• All physical therapists and/or bodywork specialists
• Any provider whose medical records you may one day require, or whose opinion you may need to seek, or whose treatment has been part of your child's scoliosis journey

3.  Create a file on your computer to keep track of all your child's scoliosis measurements and treatment appointments with outcomes.  For ongoing physical therapy or bodywork, you can simply enter a starting (and ending) note, with any pertinent details you wish to include, but do keep this brief--this document is an At-A-Glance type of document.  If you want to keep extensive notes, make a separate file for that.  Here are a couple of examples (totally fictional):

January 23, 2005
X-rays, supine
Dr Scoli Expert, Children's Hospital of Your Town
After Cast #4
Levocurvature T6-T12: 30*
Dextrocurvature T13-T20: 20*
In Cast #5
Levocurvature T6-T12: 15*
Dextrocurvature T13-T20: 8*

February 12, 2007
Feldenkrais bodywork
Began monthly sessions of 1 hour private lessons
Ms. Goodkind, Your Town

June 8, 2007
X-Ray, standing, out of brace 24 hours
Dr Scoli Expert, Children's Hospital of Your Town
Levocurvature T6-T12: 35*
Dextrocurvature T13-T20: 28*
Height: 48"
Weight: 46.5 lb

4.  Behind the X-Rays divider, place print-outs of all the x-rays of your child's scoliosis in chronological order.  You may choose to use a three-hole punch on these print-outs, or place them in sheet protectors if you want to get fancy.  I prefer to leave these unmarked so the picture of the curves is clearly visible.  I label these on the bottom, but you could easily put your labels on the top if you prefer:

• Bottom left: description, such as, "Supine, in cast #5," "Supine, after cast #5," "Standing, out of brace 24 hours," or "Standing, in 3rd brace"
• Bottom right: date of x-ray

5.  Behind the Photos divider, you will place sheet protectors with 8.5 x 11" card stock on which you've affixed photos of your child's shirtless torso, your child in casts, your child in braces.  You may also wish to include photos of the casts and braces (unoccupied) from several angles if you like. Include the date the photos were taken, and place them in chronological order.

Shirtless torso poses should include:

• Standing, front view
• Standing, rear view
• Standing, side views (both)
• Bending over in dive position with any rib hump/abnormality clearly visible (this may be from behind, from behind/above, side view, or several of these--use your judgment)

In-cast or in-brace poses should include:

• Standing, front view
• Standing, rear view
• Standing, side views (both)

Take photos of your child in casts and braces when they are new and when they are about outgrown.  Take shirtless torso photos before every exam; every couple of months when your child is an infant, stretching out to about every six months by about the age of five or six.  Be sure to take photos of your baby as soon as you get him/her cleaned up after a cast comes off, too!  (I'm sure I don't really need to tell you to do that!)

6.  Behind the Physical Therapy/Bodywork divider(s), keep notes about any appointments and exercises to do at home.  It's a good idea to use headers like those in your at-a-glance measurements documents so you can keep track of the progress.

That's it!  You're prepared for anything now.  Well, anything a scoliosis specialist might need to know, anyway.  I hope this helps you!

Do you have ideas to share or things I should add?  Please tell me in the comments.  I'd love to get your feedback!

Don't Be Surprised: A Notebook Helps with Organization

Do you have a scoliosis notebook?  You really should.

I'm going to share with you how I organize ours, but first, a cautionary tale.

I started this notebook while The Dude was getting his casts--there was just so much information to keep track of, and we were learning as we went.  Plus, when we had questions or needed to ask our out-of-town casting doctor whether The Dude's cast was really getting too small earlier than expected, we had to email photos.  It seemed a good idea to keep all those photos in one place, too.  I have X-rays, measurements, and provider contact information in the notebook, too, along with dates of the various appointments, brace types, and other pertinent notes.  So organized!  (If I do say so, myself.)

A couple of years ago, life took some challenging twists.  I was physically ill for a year.  Also, we bought/sold/moved house.  That was hard.  Did you know we homeschool?  And The Dude's Daddy travels often for work?  Somewhere in all that, the old laptop computer died a sickening and sudden death, from which no data could be resurrected.

I didn't give up the notebook, but I did get severely off track.  I made handwritten notes rather than typing things in an orderly fashion.  I took photos but never printed them.  I didn't record the dates of all the brace adjustments.

But it was ok, since we were in a holding pattern with The Dude's scoliosis treatment.  Nothing was really changing--the X-rays would show a few degrees improvement, then the next visit a few degrees unimprovement; he would outgrow one brace, and get a new one; and so it went.  Until it didn't.

Suddenly it became clear that we were in a progressive trend again, and we found ourselves seeking another professional opinion, and there I was with my seriously outdated notebook.  I couldn't make sense of my notes (who can remember things from 9, 12, 20 months ago?--that's why we take notes, after all!), and I didn't have any photos of The Dude in his third brace at all (we'd moved on to the fourth already), and no prints of out-of-brace photos in over a year.  Ok, over a year and a half.  Worse, I had not printed a few x-rays from the time when I was so ill, and I found that the new computer could not open the files to print without some new image software installed.  I don't have new image software yet.  (I was getting an extra copy of the CD for the orthotist, and he always prints and measures for his own use, so I wasn't completely useless.  Just slack.)  Need I tell you that I stayed up late a few nights just getting ready for the appointment with the new specialist?

Yep.

But it was worth it.  The specialist quickly got a clear picture of The Dude's atypical scoliosis, and came to a quick understanding of his treatment thus far, and spent his time on thoughtful consideration of the case rather than on gathering the history.

So, heed ye my cautionary tale of woe, and don't get behind on keeping your records!

(An aside: you are getting all your child's x-rays on CD, right?  This is important.  Do not rely solely upon print-outs.  When you take your child to a new specialist, they will need to have the CD so they can enlarge, adjust contrast, measure curves, etc.  Also, print-outs are subject to the vagaries of existence as a piece of paper, and having your own electronic file is your insurance.  Some offices charge a small fee for providing you with a CD, but it is well worth it.)

Next up, a post devoted to the template for our Scoliosis Notebook.  Check back soon.

My Garden Walk

I've been downloading all the posts of this old blog, and of course, I've been reading them as I go.   It was time to clean this blog up and make it relevant and useful, if it can be.  Declutter.  You know, put all the old baby things into storage.

And as it happens when putting away old baby things, or perhaps it's more like pulling them out, in this case, since it has been years since I have looked at them, I have been swept along on waves of nostalgia.

I firmly believe we don't undertake such things unless we have made a conscious choice, or have a subconscious need, to revisit these old memories.  I have been avoiding them.  For years, apparently.  Until now, I hadn't blogged here since 2011.  But I've got some good reasons for coming back, and for reworking this blog.

Why did I stop blogging here for a while?  Honestly, after the whirlwind of casting followed by the early bracing mistakes, I think simply having achieved a lack of desperation felt like we had arrived at a normal life.  When it became apparent we were in a holding pattern of X-rays and brace appointments--until The Dude reaches skeletal maturity--I felt like I had probably outlived all the blog-worthy stages of this scoliosis journey.  Certainly, I felt I deserved to have outlived them.

But this journey isn't over, and there's much yet to be written in this particular Progressive Infantile Scoliosis Story.  Much has changed since we started seven years ago, not only in our lives, but in the field of treating PIS.  I worried a little that my information was outdated, but I'm not trying to write the manual--just the story of our scoliosis life.  Thank you for joining us!

To know of someone here and there whom we accord with, who is living on with us, even in silence--this makes our earthly ball a peopled garden.  ~Johann Wolfgang vonGoethe