This Present Journey

So much has happened since I posted over 2 years ago. My youngest child, now 11, has been actively battling with a rare health condition.  He was diagnosed when 5, but we knew something was up by 2 1/2.  It just took over 2 years to find a doctor who knew what his condition was.  

If you meet us, most people would never know anything was going on.  I'm thankful for that and have been pretty quiet about his condition because I don't want him treated differently or stigmatized in some way. However, our last doctors appointment gave me much to think about.  One of the specialists who sees our son recommended I "put myself out there."

So what is his condition? Parry Romberg Syndrome.  He won't die from it, but he does have to learn to live with it. Every person with PRS has a different  story.  Some have seizures, others only facial atrophy.  Most will have headaches of some degree and may develop anxiety, or depression.  A few learning troubles. It can effect the face, skin, teeth, jaw, skull, brain, eyes, ears, and in a few cases limbs and the trunk. 

For us, thankfully, an early diagnosis, meant early treatment. His facial scars are minimal and though asymmetrical he is handsome and not too different from any other child.  Since the condition is rare very little research has been done.  Our first doctor was AMAZING, and started him on a new form of therapy at 5 years old.  He went into 'remission' right away and stayed there for 4 years.  

For those 4 years we hardly thought about his condition.  It was there, his face on the right side grew more slowly, but the pain was much better, scarring was softening, and the color of his scars was lighter. 

Then, at 9 we were packing to move and he had a weird stroke like episode! It was on his left side. I knew immediately it was the PRS since his is right sided. My fears that it would go inward to the brain were realized. The right side of the brain controls the left side of the body. 

Since then he had 5 total stroke like episodes, and daily horrible headaches.  Our local doctors sent us to Dallas to specialists who had seen other children with PRS.  My son up to this point had heard from every doctor he had ever seen "You are probably the only patient I will ever see with this condition."  He was surprised to hear the TX doctors say they had seen others.  

They began immunosuppressants and other meds to stop the progression. Since then 'episodes' have stopped but the pain is ever present.

There are many stories I will share in the future, it is just too much for one entry.  We have found some things on this journey that have helped us, I hope they might help someone else too.  

If you were given a diagnosis of Parry Romberg Syndrom, En Coup De Sabre, morphea, or facial atrophy I can offer you hope!   

The condition does not define our family or my son.  When he was diagnosed I told him we all have something. I have a bad back (3 surgeries so far), my hubby is hard of hearing, my daughter has asthma.  This is his 'something.'  My job is to help him on his journey and see how far he goes.

We should not judge people by their peak of excellence; but by the distance they have traveled  from the point where they started.  - Henry Ward Beecher