Mayo Followup1

,
On Friday we drove up with the kids to Rochester for Cee’s first followup appointment with our rheumatologist.

Cee’s pain level is much lower than it has been, but she still has migrating joint pain.  It lasts in a certain joint for 2 days or so before moving to another joint.  She does have a rash that seems to disappear overnight and return to worsen throughout the day.  Her appetite and activity level have improved greatly, even if she isn’t back to normal, and she isn’t losing weight anymore.  Given all this, I was pretty optimistic about the appointment.

The doctor listened to our update and was pleased that Cee is feeling better.  He was concerned that the medicine, although it’s had some positive effects, isn’t quite doing the trick.  Cee’s blood work came back either about the same or slightly worse  than when she left the hospital.  Her body won’t be able to grow and function normally until we get rid of the inflammation, so it’s important we keep fighting beyond her just feeling better.  The doctor explained it like this, “The weather has improved, but the climate hasn’t changed.”  We were given three options to try to change the climate:

1.  Double Cee’s dose of the current medicine (Naproxen)
2.  Switch to steroids
3.  Switch to a daily injectable biologic

Ultimately we decided to stick with the least invasive option and just double her dose of the current medicine.  He said we could try that for another 6-8 weeks and return to Mayo to evaluate.

We asked at what point Cee would cross from Reactive Arthritis (isolated incident) to JRA (chronic disease).  He said that officially it would be at our next visit if she hasn’t improved by then.  But unofficially, he thinks we’re there now.  If it was an isolated incident, her blood numbers would be showing improvement.

I had a chance to flip through the medication brochures the rheumatologist sent home with us.  If we have to change Cee’s meds, he wants us to know what we’re getting into.  Yikes!  The daily injectable aspect makes me super nervous, as do all the side affects.

The brochures also reminded us that since Cee officially has an auto-immune disease, we need to be careful about what she’s exposed to.  It’s going to be hard to balance keeping her safe without keeping her too isolated.

We are thinking about trying to eliminate inflammatory foods from our family’s diet.  The doctor said there haven’t been any studies (because it would be difficult to prove) on foods’ affects on arthritis in kids, but it’s worth a shot.  This website has a list of how inflammatory different foods are.  Negative = bad.  Positive = good.

My heart is heavy.  I should be glad that she’s just feeling better.  I should be glad that we have a diagnosis so we can start working on a
solution.  I should be glad that we have a caring doctor.  But my heart is heavy anyway.  The bottom line is that Cee’s health isn’t
actually improving.

I’m tired of looking on the bright side. Tomorrow is a new day, but for today I’m just going to let the diagnosis sink in and be a little glum.  I’m going to march around the house being sarcastic and kicking things.  The kids are in bed, so they’re safe.  David on the other hand…  Poor David was up with Cee multiple times last night crying in pain, so we’ll have to see how tonight goes.

Leave a Reply

Your email address will not be published. Required fields are marked *