Friday, May 15, 2015

Myelo Clinic Today

Today was Mason's full team appointment at Myelo clinic.  Every 6 months he has this long day of checkups and testing to keep track of how he is doing in a variety of areas.  I thought I would share a few of the highlights for those who are wondering how he is doing at age 3. 

Developmental Pediatrics - According to this doctor Mason is doing great in overall development (outside of those pesky physical milestones like walking that he'll never accomplish).  He's speaking, figuring, sitting, playing, and progressing.  Yay!

Physical Medicine, Physical Therapy, Orthotist, Wheelchair Fitting, and Orthopedic Surgeon - I'll cover these three together because they are interrelated in some ways.  We came to clinic with all Mason's equipment (wheelchair, AFOs, stander, HKAFOs) and some questions. 
  1. How can we help Mason learn a safe way to climb down to the floor from his wheelchair?  Currently, if he climbs down by scooting forward onto his footplate and then to the floor he scrapes his back (right across the large scar where his back was open at birth).  This is bad.  So between the specialists the current plan is two-fold.  First, we'll work on teaching Mason to turn around in his seat and climb down backward like he does climbing down the stairs.  The difficulty is maneuvering the lower half of his body into the right path (because he can't feel anything) and not hurting his knees when they come down onto that hard footplate.  We'll work on it at home and then if we can't get a good climbing pattern figured out we can access physical therapy for some help.  The second part of the plan is that our wheelchair company is creating a padded footplate for Mason's wheelchair so it won't be so hard on his knees or back when climbing down.  We have to be careful that it doesn't interfere with his ability to climb UP though. 
  2. Do we need to add a heel/wedge to Mason's HKAFOs or one shoe?  His legs are not even when in a standing position, partially due to the small contracture of his left knee from the large callus that femur made when he broke the leg last fall.  Partially it is due to his hips, which are a bit unevenly seated in their sockets as well.  What this means is when Mason uses the HKAFOs in his stander he still gets a red pressure mark on that thigh that no matter how many times we've adjusted the HKAFOs we can't get rid of.  This limits his time standing.  The standing is part of our treatment of his osteoporosis, helps his bowels function better, etc.  We really need the standing and would like to be able to do it for 2+ hours per day.  Right now we've only been able to do about 30 minutes at a time before the pressure happens.  The current plan is to try adding the insoles back to one shoe to see if it helps.  We can call the orthotist to get a heel added to things if this isn't effective.
Occupational Therapy - Mason passed all of this with flying colors.  Basically she evaluates fine motor control and feeding difficulties.  He colors, draws, stacks blocks, threads large beads on string, etc.  I knew he was fine in this area already. 

Urology - Today Mason had ultrasound done to check his bladder and kidneys. The scans showed that they are stable - which means what we're doing is working.  We continue with his current medication and catheterization schedule.  We also discussed enema options with urology.  What we are doing is working well (cone enema).  That is great.  However in the future we know we want to transition to a different enema setup that is more independent for Mason to do himself.  They referred us to the Colorectal specialists to begin that evaluation and process.  (For those in the know, we're looking at the Peristeen system. Many people around the country travel to Cincinnati Children's Hospital for their week long program but we're blessed that one of the main doctors from that program is now heading things up at our hospital. ) 

Mason busy making friends.

Orthopedic Surgeon - Yes, this is the second time I'm mentioning this doctor.  Why?  Because we have a separate issue that we will be watching with just them.  Today they sent Mason for spinal x-rays to check the curvature on his spine.  Developing scoliosis is something that in not uncommon with Spina Bifida, especially with Mason's level of paralysis (incomplete T12).  Today we saw that he does have a curvature beginning but it is below 10 degrees so it is called Mild Spinal Asymmetry.  If it increases to more than 10 degrees it will be scoliosis.  For now we will track this every 6 months.  If the time comes that his curve increases we have a variety of treatments depending on how severe the curve becomes (from bracing to spinal surgeries like a fusion or having rods placed). 

Well, those are the major things from today! Next week he has his vision checkup with his developmental ophthalmologist.  He's hoping to choose new glasses - I'm wondering if he'll try a different color. Overall Mason is a happy, growing little boy who is busy enjoying life.


  1. He's so cute! But why doesn't he get a brace now for his back- to prevent further curving?

    1. Great question! The bracing brings its own challenges (it affects how he can sit, climb, and move, affects his body's temperature and he's already prone to overheating due to a medication he takes, etc). So because his curvature is very small they don't brace it. Instead we'll focus on keeping Mason active and using all those muscles that make up his core. The stronger his core is, the better it is at keeping his spine lined up where we want it.

  2. Tristan, I read and reread this post! Soaking it all in! Thank you for details - it helps this waiting Mama so much. I know Tate's scoliosis is severe, and have wondered what they will recommend. So anxious to get our boy home and get him to clinic!!!
    Hope your pregnancy is going well!!

  3. I didn't know that anyone from Cinci landed in your area. I've seen the Peristeen and it looks pretty neat. In the future would you consider an Ace/Malone?

    1. In the future we'll consider a surgical option, possibly mace/monti or ace/Malone. However for now we won't. A few reasons: What we're doing works. Those are major elective surgeries with horrible complication rates. What we feel is that until Mason is older and can have some say in the surgeries we don't want to do them. Now, were his situation to change and the cathing and nightly enemas become ineffective then we would consider surgery earlier. Honestly, Mason could be out of diapers right now and just use a pad for occasional urine leaks just with our current routine. It works really well for him. I know a lot of people consider these surgeries because their child is school age and having bowel and bladder accidents daily. I understand that, as diapers have a definite stigma attached when you're not a toddler. But for now we're not in that situation.


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