How Did We Know?

People keep asking me how I knew that something was wrong with #4, something bad enough for doctors and emergency rooms and visits to Children’s Hospital.  I know what they are really asking.  They want to know when we saw the train headed for us and what did it look like?  They want to be able to jump out of the way.  I know because I’m a hypochondriac mom and the tale of #4 would have me crazy every time someone had a bump that swelled.  (I really do fear the next big catastrophe.  It’s part of my charm. You’ll have to trust me on that.)

So here’s what our speeding train looked like:

What we now know is that Juvenile Arthritis is an autoimmune disease.  Sometimes they just show up on their own, and often a really bad virus or infection will kick it off. Looking back through her medical history, it looks as if #4’s began with a nasty ear infection when she was 2 1/2.  Prior to that, she had a normal and boring medical chart.  After that, it got interesting.

It all began with Malignant Otitis Externa, we think.  That’s a fancy name for a nasty outer ear infection.  Her ear swelled up until it looked more like a fist than a little girl’s ear, and there was a dark purple ring of infection which spread out into her hairline and around onto her cheek.  Antibiotics stopped the infection, but not the chain of events which would take 5 years to end in Arthritis. (We think.  This is all conjecture based on her medical history, but her Rheumatologist thinks we’re right about it.)

For the next 5 years, #4 had what we called “flash fevers”.  We now know that these fevers of 102-104, which would hit her suddenly and disappear within an hour or two with no other symptoms, are symptoms of auto-immune issues.  Not quite as common, but just as mysterious were the rashes which would come and go as well.  She was never quite healthy but not really sick either.  Her doctor was puzzled, but as #4 was able to do everything she wanted to do, we honestly didn’t look too hard for answers.  The fevers were puzzling, but didn’t interfere with her life.  He told us to keep and eye on her, and we did.  She looked like a normal little girl to us.  I don’t think I wanted to admit that there was something wrong with her, but I now will admit that I knew it.

When she was 6, my brother got a MRSA infection in his hand which landed him in the hospital for 2 weeks.  He was a single dad, and my nephew came to stay with us.  The day my brother came to get his son was the day I admitted the truth about #4.  I had a newborn in my house, but I didn’t worry about him. I stood on the front porch like a crazed woman and yelled at my brother “how dare he put #4 in danger.  She’s medically fragile.  She gets all kinds of weird sicknesses and we have to be careful with her. What was he thinking to endanger her that way?”  Medically Fragile.  No one had ever called her that.  I had no doctor to back it up.  I just knew.  There was something wrong with her immune system and we had to be careful.

Fast forward to the beginning of this January.  The pieces started to fall into place when she woke up with this:

It looked like a swollen toe.

It looked like a swollen toe that she couldn’t remember hurting.

Then it looked like a swollen toe that never went away.  It started to go down, but never really did.

9 weeks later.

That’s where we get to the knee.

You can’t see it so well in this picture. Let me see if I can help.

See how the good knee has a knee cap and the other one doesn’t?  It was just as swollen on the outside as the inside before they drained it. (That was over a month ago.) The drained part never refilled but the other never went down.  The joint kept tightening until she could no longer get it straight.

This is what sent us to our family doctor who referred us to an orthopedist, Children’s Hospital, and a rheumatologist.  It felt like blinding speed which took us from an active child to one with a chronic debilitating disease, but it wasn’t.  It was years in the coming.  It’s just the tail end of it which was fast.

As of today, she has 4 joints involved: the knee, ankle, and top of the foot on one leg and the toe on the other.  She’s on NSAIDS and methotrexate and we’re still waiting for improvement.

That’s what our speeding train looked like.  A long slow series of unexplained fevers and rashes which never lasted long enough for the doctor to witness, and then the swelling and contracture.

Sometimes hypochondriac moms are hypochondriacs because we know the enemy is here….we just don’t yet know what to call it.