JIA- Part 5

With the steroid injection complete, we go home to wait and hope that his limping will improve. I watch from the wifi camera every morning when Cooper first gets out of bed. Does it seem like he is limping less? It does not improve. He won't bend his knee. Weeks go by. Still, nothing. Frustration hits an all time high. This is going to be our lives now, these scary medications, the side effects, the hoping he doesn't catch any bugs too scary because of the medications. I had talked to many parents who told me about the different medications, and how they make sure to give it on the weekend, so their child can be sick during the weekend and not during the week. Someone told me they actually hallucinated on the medications. It's a crazy and sad way that people are living, but the alternative is what- letting your child be in pain and ruin their joints? I can't express how low my heart feels during this period of time. Just like when I first learned of Cooper's Down syndrome, I seek out other moms who had faced a JIA diagnosis. These moms are life lines. They are incredibly powerful and resilient women. I cry on the phone with more than one of them, which is not like me at all. I'm so grateful for each of them helping me and listening to me, but at the same time, I wish I never had to talk to them about joint inflammation at all.

With defeat settling in, I decide I need to get Cooper into a different rheumatologist that practices at a campus of the children's hospital a little closer to our home (2.5 hours instead of 3). I researched and found a doctor at that campus that I want for Cooper. The doctor I want has been recommended to me by another Down syndrome mom whose child goes to that office, so I know this doctor has experience with Down syndrome and inflammation. For unknown reasons, I am told I can't see the one I want, but can schedule with any other provider. This frustrates me, but no further options, I schedule with whichever doctor has the soonest opening, two weeks away. The same day, to my surprise, I get a message that there is an opening in Colorado for the following week. I take it.

August 10- the CO rheumatologist

I had hoped the steroid would "fix" Cooper's knee and I wouldn't feel the trip to Colorado would be necessary. But he wasn't getting better, still. After we get a cancellation appointment for CO, I feel like we need to see this appointment through. So my husband and I load up Cooper and make the 8.5 hour drive for a second opinion (family helping with our other two kids at home, thankfully).

This rheumatologist agrees with the diagnosis and the treatment so far, including the steroid injection and lack of aspiration. I bring out my file of documents, I quiz her on the papers I had read, including one that she had her name on. I ask every question I can possibly think of. She wants to do an ultrasound of the knee to evaluate the synovitis in the joint, and talks about the medications she would suggest starting Cooper on. But she is conservative about the medications as well, because it's only his knee affected right now. Because we are paying everything out of pocket for this trip, we opt to have the ultrasound done back home where insurance will help. "That's fine. I know the doctor you will be seeing in Utah. So I will contact her and let her know the plan." We drive back home that same day.

August 19- the 2nd UT rheumatologist

The new rheumatologist does not know the plan from the Colorado doctor, like I was expecting. We talk extensively about Cooper's history. I want to do the ultrasound. She says ultrasound is new to her, and she isn't confident in reading the results. This comes as a surprise to me. She talks to me extensively about medications and vaccinating, and upon examining Cooper says, "It's hard to say whether or not there is still active arthritis in the knee." To me, this gives us even more reason to have an ultrasound done. If she's unsure the status of his joint, why wouldn't we pursue a way to help us be sure before putting him on medication? Especially knowing he can't communicate if it's feeling better or worse.

"If you really want the ultrasound done, I will order it," she says. Just like the original rheumatologist on the day of steroid injection, I am being led to feel like my decisions for Cooper are foolish, a waste of time. But today, I am not going to back down.

"Yes, I would like the order." I am sure. My voice is sure.

She has the nurse bring in the order. And then a wild goose chase begins. The imaging department at the children's hospital is full today, but they tell me we can do the ultrasound at any clinic. Great, there's one by our house. We drive 2.5 hours home, and I begin to play their games. I call the scheduling line, like I was instructed to do. The person who schedules the procedures tells me they have to confirm that they order is valid with a technician before they can schedule. "Please hold," she says.

She comes back on. "Ma'am," she says, "this technician is telling me we don't do this type of ultrasound at this hospital."

What? I'm confused.

"Can you call the doctor and have them clarify what they are wanting on the order?" the woman asks me.

Sure, let me play the "call the doctor" game.

I message on MyChart and I call the office. I wait. The office messages back to tell me that they have the order fixed, but I will actually need to do the ultrasound at the main hospital, not at any facility like I was told. I call the rheumatologist office, just to confirm that things were in order before calling the scheduling line again (and get through their horrid phone menus. No one talks about the phone menus when you're dealing with your child's medical care!!!). They verify that the order has been updated, and that we would have to travel back up to the city for the procedure.

Great! Another trip to the city! We were just there the day before.

I call the scheduling line back and tell them the doctor fixed the order. She has to verify with the technician again. She comes back on. "The technician is saying the order is not updated."

Ugh, annoying!

"I just talked with the doctor's office and they told me it was," I say.

She goes to talk with the technician again. Finally, she comes back on. "The technician is saying we don't do arthritis ultrasounds here."

Okay, what? Why is this so hard? The only children's hospital in the state, one of the leading children's hospitals in the western United States, does not do this type of ultrasound? How is that possible? The CO doctor made it seem pretty standard. I'd done my own research as well. The literature is very clear about how easy, inexpensive, accurate, and convenient ultrasound is for evaluating synovitis in a joint, especially in a small child who won't sit still for an MRI. I am not understanding why this is so difficult

I am shocked and frustrated, so I message the doctor again, hoping to get this sorted out once and for all. She messages me back, the actual doctor, not an office nurse, and tells me that the order can't be completed, and we'll just have to forget about the ultrasound. There are no other solutions offered to evaluate Cooper's knee joint.

Do you think I will take that as the final word?

No I will not.

That same day, before I even had a chance to read the message from the doctor about the ultrasound not being possible to complete, I walk into our local, rural hospital with the ultrasound order in hand. I find the imaging department. "Can I please talk to one of your radiologists?" I explain that I'm trying to find someone to do this ultrasound on my son.

The radiologist comes out, takes one look at it and says, "Yeah, we can do this. It's pretty standard. Will only take about five minutes."

They schedule us for the next day.

Heading to Colorado