Rheumatology

I hope I spelled that right. Rheumatology is quite the assortment of letters my mind hasn’t figured out how to type in the proper order yet. So let me do an update of where we are now from where I was two nights ago when I was fearing the worst.

Yesterday we did two things, first we went to the pediatric eye center at Duke and were seen by one of my daughter’s eye doctors.   We then ran across campus, and yes, we ran, and it was fun.   Okay, stop, I have to tell you about the running because it’s a quaint little story.

We’re at the Duke Hospital campus a lot.   There is the Duke Eye Center there, the main hospital and the Duke Children’s Hospital all in close proximity to each other.   There is also a huge parking garage with an underground tunnel that connects into the main hub of all this exciting hospital stuff.   My daughter has decided that there is nothing better than running through that long tunnel.   She loves looking back at the blob that I am in her vision and seeing if I’m farther away or getting closer.   She laughs out loud in that little tinkly girl laugh as she runs and looks back, runs and looks back.    And here’s the thing about that laugh and her run: it makes people smile.

My daughter makes people smile in a way I’ve never seen before.   She is in a place where people have pain and sadness.   They’re tired or scared or overburdened with medical news or they’re just plain done for the day after working a thirty-six hour shift.   The last thing on people’s minds as they go to and from the parking lot is running and laughing gleefully.

When I figured this out, I started running after her.   I would look exhausted and laugh back.   Adults would make comments to me and smile and I would make comments back about doing research on how to bottle youthful mirth and energy.   I didn’t stop her running, because I was also seeing if she could navigate around people and obstacles (which she can.)   And now it’s our thing.   We can get from one place to another place in the hospital in half the time, with five times the smiles, all because of a little girl’s running.

So where was I, ah yes, Rheumatology.   We arrived and I spent a very pleasant thirty minutes talking to one of the two leading doctors working on my daughter’s case from the rheumatology side.   Here is what they have decided she may (or may not) have and what the course of treatment will be:

She fits in part, but not well, some of the conditions of the following:

• Behcet’s Disease:  fits some of the eye symptoms, no incidence of oral or vaginal sores
• Sarcoidosis: fits some of the eye symptoms, does have light hair and skin but dermatology did not think there were any connecting dermatological findings to match
• Vogt-Koyanagi-Harada Syndrome: fit more of the eye symptoms and onset but doesn’t meet all the criteria
• Retinal Vasculitis:  idiopathic diagnosis

The good news is it doesn’t matter which or what she has, there is one treatment that’s been in use for  twenty years that has high efficacy for all of them:  Remicade (Infliximab).   Starting tomorrow (pending the healthcare approval has gone through, which I think it has) she will have a monthly IV infusion of this medication.  She’s going to be on the prednisone for a bit longer while we taper it off and some steroid drops for her eyes as well, but hopefully this will help get the inflammation gone and give the immune system time to reset.   There is a good track record of patients with similar situations gaining most or all of their prior vision back, although it’s going to take several months to see where we will ultimately be. 

The above diagnosis options don’t necessarily mean she has a condition for the remainder of her life, this may be a single event and after her eyes have healed and her immune system has had a chance to “reset” she’ll be tapered off the medications.   We’re not sure how long that will be, but it will likely be at least six months.  

So we have a plan.   Tomorrow we put it in action.   I’m already planning my blog posts with titles about all the amazingly small things she can see from a distance.

The Big Boy Update:   My son came home with a collection of little papers on which he’d done drawings.  My husband asked him what they were.   His description of them, in order was as follows: 1) “Greyson”  2) “Sidney”  3)  “Greyson and Sidney: Sidney is the one with the hair.”  4) “Greyson and Sidney behind each other” 5) “X’s” (there are a collection of X’s on the page.)  6) “I don’t know.”  (There is a suspiciously heart-shaped drawing in the center of the page.)   Any guesses who my son is in love with at school right now?

The Tiny Girl Chronicles:  My daughter is getting better and better at the eye drops.   She’s wanted an ice pack for here eyes (a psychological comfort item) since the beginning.   But I’ve noticed she’s used it for shorter and shorter period lately.   Tonight she said to me, “mom, I don’t need the ice pack anymore.”