Friday, August 22, 2014

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.

Wednesday, August 20, 2014

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!




Tuesday, August 12, 2014

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.

Monday, August 4, 2014

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 

Saturday, March 5, 2011

Bodywork: an Introduction (Not an Intervention)

For years, I have struggled with finding a way to help The Dude strengthen his muscles, counteract the scoliosis, and assist him in living pain-free.  Yes, he does have pain and discomfort.  He can tell me where and what hurts, and has for several years.

Physical therapy does wonders for so many people, particularly the Schroth method for scoliosis.  There are no Schroth method therapists in our region, but we have had the great fortune to have worked with two Schroth PTs within the past year.  One passionate therapist visited us from across the country, working with The Dude a few hours of her vacation, and the other talented and energetic therapist devoted most of two days to us when we last went to D.C. for our Rigo-Cheneau brace adjustment.  I also have the Schroth Method Book and a marvelous anatomy text recommended by one of our Schroth PTs: Atlas of Human Anatomy by Frank H. Netter, MD.  Even with the detailed instruction of these devoted therapists, the well-written notes given to me (typed! with color-coded tables!) by one of them, and my own dedication and, may I say, intuitive application, let me be honest: it is not easy getting a 4-year-old boy to do physical therapy exercises correctly and/or consistently.  Not easy! 

I recently began thinking of bodywork.  I began wondering if The Dude lacks something fundamental in body awareness--you know, from being in body casts and rigid, full-time bracing for at least half his life--and whether this kind of modality could help him relieve some of the pain and discomfort he feels.

See, I had a couple of weeks of life-changing lessons in the Alexander Technique when I was a student in music school.  It gave me a freedom of expression and control during my subsequent solo recital that, frankly, years of clarinet lessons and performances and practice could never accomplish.  I dare say Alexander Technique managed to undo much of the damage that years of lessons, performances, and practice had caused!  But that would be subject matter for another blog, entirely, I am sure.  So, I began searching for someone local to teach Alexander.  And guess what: I found none!  (This may not surprise you.)

Have you heard of the Feldenkrais Method?  It is quite similar to the Alexander Technique.  And there are some teachers here in our metropolis!  The Dude has had two lessons with a Feldenkrais teacher, and from what I have learned by observation and research, I believe this modality will give my little Dude the tools he needs in order to use physical therapy later on.  I believe he has been lacking some fundamental sensory integration, or body integration, or perhaps it's mind integration?  Whatever you call it, I am encouraged by the effects of his first two lessons!

There are no corrections in these lessons.  No directions to do things.  Just simple being, allowing the teacher to manipulate the various joints, bones, appendages, calling attention to connections or motions from time to time, but always allowing the teacher to take the lead.  The method teaches awareness of the entire body's potentials for movement, and the mind will absorb and use this naturally.  There are no therapeutic goals, no symmetry to be attained, no focus on the spine or scoliosis or dysfunction or deformity.  No interventions.  I imagine it's both a puzzle and a relief, now that I think about it!

After some gentle manipulations during his first lesson last Friday, his posture spontaneously, beautifully corrected to a free, upright, balanced state, and most impressively, his head was not jutting forward!  Those ropey muscles at the back of his little neck were, for the first time in memory, not prominent and overworked!  This effect lasted several days.  I was SO pleased to have already scheduled his second lesson, and have been looking forward to it the entire week. 

He had the second lesson today, and after we returned home, I measured his height.  A full 3/4 inch taller than before Feldenkrais.  I am floored.

I have already scheduled a series of 10 lessons for The Dude...to his moderate dismay.  He says the lessons are relaxing, but at an hour per lesson, I can see that he's done before the teacher finishes.  Also, while the teacher is technically in our metropolis, she is in fact an hour from our home, so altogether this is a three-hour commitment, not including the getting-ready-to-go routine.

But the difference here is that, for most of his young life, The Dude has had interventions and therapy to address his scoliosis.  It is what it is, but focused interventions do have a profound effect on an individual.   And I suspect that learning to freely use all his parts, to use his whole body, just the way he wants to, will have an equally profound effect.

Monday, March 29, 2010

The Rigo-Cheneau System Brace, and The Short Version of Treatments Til Now

Originally posted 3/29/2010

Apparently, I needed a little time to live with the new brace before posting about it.  We got home with it a little over two weeks ago. 


The trip was wonderful, far better than we could have hoped for.  We took several exciting modes of transportation, saw snow, stayed one night in a hotel and two nights with friends who have toys, played outside, and got a new brace.  The Dude thoroughly enjoyed the transportation.  He loved the hotel and the friends.  He handeled the brace process remarkably well, and he made many people smile all over the east coast.

So here's a little sum-up of his scoliosis treatments to date, to give you the picture of our journey thus far.

The Dude was casted using EDF/Mehta method for just over a year, and had a series of 7 casts, most of which had shoulder straps. The last three casts gave no lasting correction, so he was transitioned to a Providence brace (night only). That was in November, 2008--his curves measured 29 and 22. A year later, December 2009, his curves had progressed to 39 and 24.

We had a consult with a doctor about VBS (vertebral body stapling) when The Dude came out of casts, but learned that his curves then were too great for vbs to work. It is an internal brace, essentially, that is meant to hold very mild curves. Also, his bones are still too soft to be a candidate.

So we stayed the course with the Providence brace until we learned it was not holding him.

We learned about the Rigo-Cheneau system brace from a Schroth physical therapist. This type of brace addresses the three dimensions of scoliosis--I don't know for certain, but I read that this is the only type of brace to do that. Our casting doctor grew quite excited about this type of brace after calling and talking with the orthotist who makes it, and encouraged us to go for it--writing letters for our insurance company and a prescription for the new brace also.

We were scheduled to go get this brace made last month, but Snowmageddon cancelled our flight, so we went last week. (We still had to climb hills of dirty slush and snow that blocked the sidewalks, but at least the weather was balmy and clear!)

The process was amazing.

The orthotist carefully examined all The Dude's xrays, from the first to the most recent, and looked at photos of The Dude before casting, between casts, in casts, and after casting. We also gave him a chart of The Dude's measurements throughtout his journey so far. (All you parents of PIS kids, if you do not yet have a notebook with all this stuff, I highly recommend making one now!) He examined The Dude clinically also, observing his posture while sitting, standing, walking, and just being The Dude. He also looked at both of our Providence braces.


To make the R-C brace, the orthotist uses a special camera to take a 3-D image of the patient's body. That image is then transferred to a software application that allows him to manipulate the image and apply some correction to the shape of the body. Then, the data is transferred to a lathe which cuts a block of foam into the shape that will become the mold for the brace. After the lathe, the orthotist makes further refinements to the form by hand, which takes a couple of hours more. Finally, he molds the plastic for the brace around it.

Then the process of fitting begins. At first, there is no padding on the brace at all. The orthotist makes marks on it to begin cutting it down to size little by little, top and bottom. He flares it in places and trims in places, adds padding, and gets a good, comfortable fit.


Then we took it home for The Dude to wear that night. In the morning, we checked for pressure points (red marks) and returned to his office for further adjustments. The Dude had been complaining that it hurt his tummy, so the orthotist cut a tummy hole. He also put in some ventilation holes all around the brace. He added some straps inside to push against the curves, and a strap over The Dude's right shoulder to help balance his shoulders. (His right shoulder is higher than his left due to his scoli.) The brace pushes up under the left shoulder. In the brace, he looks very good.

By the way, this is exactly opposite what the Prov does--it pushes way up under his right shoulder--they said that it has to do that to push in against his curve (which we have since learned meant only the lower curve, as the Providence brace cannot treat curves as high on the spine as The Dude's upper curve).  We feel a lot more optimistic about this different configuration, which manages to both push in against both of the curves, and up on the left/down on the right, thereby forcing that upper curve into better alignment.

The brace itself is quite lightweight. Whereas the Prov seems to be mostly a thick layer of padding and is heavier than the R-C brace, the R-C brace has very little padding. It does not need it. It is barely noticeable under The Dude's clothing! The shoulder strap is a type of elasticized velcro, and barely peeks out from under the neckline of his shirt. It is cut high enough in front to allow him to bend his legs up 90 degrees (unlike his casts!), but still it achieves purchase against his hips to gain the needed vertical correction--it does that by having fairly deep indentations just above his hips and going down lower in the rear/sides.

The Dude is not happy about having to wear this brace night AND day, but it is not an uncomfortable brace. Just being in a brace is not fun, but I think if a child has to be in one, this would be a pretty good one to be in.

We do not yet have an in-brace xray. Their method is to allow the child's body to adjust to the brace for about a month before getting the in-brace xray. This seems to make very good sense to me, especially after seeing the brace-making process, and how organic and body-patient-specific it is. If the in-brace xray looks good, we will then wait about 5 or 6 months and get an out-of-brace xray. The expectation is that this brace will last until he gains about 8 pounds, or about 9 months.



I cannot say enough good things about our orthotist. He was absolutely wonderful to work with, and is a very compassionate, devoted professional. If anyone wants to talk with me about it, I would be happy to answer any questions.  Just leave me a comment and I'll do my best.