Kids and Chronic Pain

My kids both have Hypermobile Ehlers Danlos Syndrome.  This means that their body doesn't make collegen propperly.  As a result their joints are very lax and prone to dislocations.  On average day would be around 50 dislocations a bad day (during a growth spurt or weather change) can be closer to 80-100.  The dislocations are painful.  They often fall when ankle, knees or hips dislocate. 

It took years to find a pain medication that they weren't allergic to that could actually offer some relief.  We will always be grateful for the help we recieved from the Pediatric Pain Clinic at the Hospital for Sick Children.

Sadly, the teen years of rapid growth and the tumultuous weather of late have made life a lot more difficult.  In June both boys were diagnosed with scoliosis.  Josh's curve is very low in the lumbar region (low back).  Knowing what is happening has helped us to understand why sitting is so very painful for him.  In the morning he can manage 15-20 minutes at a time but by the afternoon lately even 10 minutes is painful.  By 4 o'clock he just can't get comfortable at all.  Pain meds are only helping a little at this point.  He is regularly needing breakthrough pain meds.  Thankfully, our amazing physical therapist has been able to help with some stretching exercises and position recommendations. Josh hasn't started to do his major growth spurt but we know that it is coming and things will get a lot worse before they get better.

I can't begin to describe how hard it is to see your child in pain and know that you can stop it.  We still have more than a month until the boys see a surgeon.  The first appointment is for assessment purposes so we still won't have a treatment plan. 

Now on top of all these challenges we have to explain to family that travel over Thanksgiving is out of the question right now.  Stopping every 20 minutes or so through what is normally a four hour drive just isn't feasible.  It isn't that we don't want to see everyone but we don't want to see Josh having to cope with any more pain than he already does.

It isn't easy but we will keep plugging along and making the best of the good moments when they come.

Introduction

If someone were to ask me about what I do I would likely respond;  I'm just me.  I do what needs to get done.

I am a teacher, a nurse, a doctor, a chiropractor, a physical therapist, an orthotist, a case manager, a pharmacist, a not so savy computer tech., cook, washer, maid, personal support worker, a friend, curriculum creator, E.C.E., recreation leader,collector of resources and a Mom.  I wear many hats over the course of a day.  Do I have the peices of paper that go with these titles?  No, but life and experience are marvelous teachers.

I am a happily married Mom with two awesome sons who deal a lot of challenges with perseverence, courage and understanding.  My sons deal with their own unique combinations of challenges which include:  hypermobile ehlers danlos, syndrome, asthma, A.D.H.D, A.D.D., Tourette's syndrome, scoliosis, sensory issues, as well as anaphylactic allergies to peanuts, tree nuts, bee stings and latex.  In case that wasn't enough they are allergic to several medications (not the same ones of course ~ that would be too easy). 

These numerous challenges have also made learning in the traditional school system very challenging.  After several struggles and many tries with some amazing educators we are now homeschooling our sons through high school.  I should have paid a lot more attention when I was in high school because there seems to be even more to learn today.

I was told recently that my work experinence had many gaps.  That is indeed true because life keeps on happening around us and sometimes we need to change plans to keep our heads above water.  I have worked as a childcare provider at home and in licensed centres, support worker, gymnastic coach, kitchen staff, administrator, advocate and educator.  I have volunteered as a probation officer, representative on the special education advisory committee, block parent, Sunday school teacher, park cleaner, advocate and community worker.

I'm just me.