Two BIG "OOPS"!

On Monday, we were told Mia had polyarticular arthritis and JJ had systemic arthritis.

On Tuesday, we were told that was a big mistake.

Mia and JJ both have oligoarticular arthritis (Mia has developed extended oligo in her writing hand). Oligo is a lot different than poly and a LOT different than systemic, but still serious. And, both kids still need treatment.

How this "oops" happened:

Apparently, a number is assigned to each patient based upon their symptoms/diagnosis. I watched the nurse look up Mia's "number" on her chart. She then proceeded to look her number up on a list to find out what type of JA she had (we were always told Mia had "pauci"...which is "oligo"). I watched her write "polyarthritis" down on her blood work order and hand it to me (I have it here at home):

So, I asked her what JJ's chart said about him (we have never been told officially what type of JA his has). So, she looked it up...and pointed to the word "systemic" on the list and gave me a look that said, "I am terribly sorry!" 

After informing my husband of this horrible news, I just sat there during the drive home and kept saying, "I am completely baffled." JJ has had fevers in the past not associated with a cold/flu and has always run a bit warm, BUT to say he is systemic is extremely serious. JJ definitely is not systemic.

So, I emailed the doctor yesterday to confirm what I had been told and she called me back Tuesday evening and apologized for the "mix-up" and explained that the manual number system and the computer number system were different (?) and that Mia and JJ were definitely NOT poly and systemic. Well, thank God for mistakes!

Oligo is...

Formerly known as pauciarticular this type, is diagnosed when four or fewer joints – “pauci” and “oligo” mean “few” – are involved within the first six months. It’s particularly common in Caucasian children and accounts for about 40 percent of new JIA cases in that group. Girls are more likely to be diagnosed with oligoarthritis and to experience eye inflammation, a condition called uveitis. Oligoarthritis typically develops by age 6. At diagnosis, frequently only one joint is involved and it’s commonly a joint in the leg, such as the knee or the ankle.

If your child also tests positive for a particular antibody in the blood, called the antinuclear antibody (ANA), she faces the greatest risk of developing eye inflammation and will be monitored very closely for eye problems. Compared with other types of JIA, children with oligoarthritis are less vulnerable to severe problems with joint function.

Under the JIA criteria, oligoarthritis is broken into two groups. Children in which the arthritis is confined to four or fewer limbs fall into a category called persistent oligoarthritis. After the six-month window, some children will develop symptoms in additional limbs and will be diagnosed with extended oligoarthritis.

Treatment for Mia (ANA+):

Now on her third NSAID, and after increasing her dosage of Indocin from 6mls to 9mls, I asked the doctor, "Where are we going with this? What's next for Mia?" I explained the pattern we have seen for almost the last four years: Mia goes on Naproxen for a year and a half. Mia flares. Change meds. Mia goes on Ibuprofen (after receiving a drain and injection in her left knee and right elbow in Spring 2009). She goes on Ibuprofen for a year. Joints flare. Change meds. Mia goes on Indocin (a year ago next month). There is talk of remission and possibly starting to wean her off of meds (the is our second talk of remission since dx) and then hand starts to flare and we increase her meds.

Plan: see how she does on the increase dosage of Indocin. Need to get the swelling down in her hand and reduce the pain so it does not affect her when she starts kindergarten this fall, as the pain and swelling are in her writing hand. If her body does not respond to meds and if she continues to flare, the doctor would like to start her on methotrexate. However, before we do that, she really wants to give this a try because she said, "Mia is still so very young. She is only five years old. And, while methotrexate does treat the disease, it comes with a ton of side effects that we will discuss when/if we reach that point. But, because of those reasons, I'd like to stick with NSAIDS for now." 

Treatment for JJ (ANA-):

JJ's x-rays of his elbows showed he has a "small joint effusion" on his left elbow. The doctor mentioned draining and injecting that elbow should his joints not respond when to Naproxen. However, we are having a love-hate relationship with Naproxen right now. It greatly reduces the pain in his joints (not all of his joints, but most of them), but it is increasing the pain in his stomach. Since starting Naproxen, he has had several episodes of extreme tummy pain and/or doubled over in pain from cramping.The same thing happened with Mia when she was on Naproxen after several months. So, they are starting JJ on Zantac (1ml, 3x a day) to help reduce the pain. If this does not help, then we will need to switch to a different NSAID to find something that works for his entire body.

When we are going back: 3 weeks from now (after Mia's surgery)

"His huge outstretched arms protect you-under them you're perfectly safe; His arms fend off all harm."

(Psalm 91:4 MSG)