Steroids and Secret Weapons...Hooray!...

We went to the rheumatologist today. It was a very long appointment but it was very informative. Our doctor, Dr. I, is awesome! She's a lovely woman with a wonderful bedside manner. She's also very up front and I like that a lot.

After a thorough evaluation of Siobhan's joints, she confirmed and diagnosis and let us know where we need to go from here. Siobhan has Oligoarthritis but is on the borderline of having Ployarthritis-the only thing that separates the two is the number of joints involved and the cut-off is pretty arbitrary.

Anyway, our treatment plan is going to be very involved for the first little while until we figure out what works best for Siobhan. She's going to keep taking her Naprosyn like we've been doing twice a day. To that, we're adding Prednisone but that is going to be tapered off over the course of about six weeks. And finally, Siobhan is going to start getting weekly injections of methotrexate which is an old school, tried and true arthritis medication. So tomorrow, Siobhan I get to go back to Primary Children's Hospital for a crash course of how to give her shots. This is all aggressive of course and there's a reason for that. Some 'markers' in her blood are elevated which indicates that the arthritis is technically all through her body. We're attacking her current symptoms now so that we can stop the JIA from going to other joints.

During the appointment, we got a lot of answers to the many questions that we've had. We don't need to put Siobhan on a special diet, but we may still load up our pantry and fridge with super healthy stuff, because it can't hurt, right? We don't need to limit her activity, just let her take the lead. Also, the sleeping thing, which I'm not sure I've blogged about, the doctor thinks is more anxiety than anything else. So we're trying to come up with some ways to combat that. Also, the ANA test that I talked about yesterday, totally Negative which is awesome!!!! That means that her risk of getting Uveitis go waaaaaayyyyy down! Hooray! So those beautiful eyes are going to stay that way!

After the doctor, we put a movie on in the car and one of the previews talked about a 'secret weapon'. Siobhan was asking what a weapon is so we gave a few examples and one of them was when you're sick, medicine is your secret weapon to make you better. She then said, 'So maybe my medicine for my knees is my secret weapon to make my knees feel better!' We then decided that since Siobhan is going to have a lot of different meds and supplements, we would a get box to put it all in and we would decorate it and write 'Siobhan's Secret Weapons' on it! We're going to use these weapons to make her feel better!

Good News...

We just got back from the pediatric opthamolgist and good news, Siobhan's eyes had no indication of inflammation. I'm so happy. The bummer of it is that Uveitis can creep up out of nowhere and there are no other symptoms to indicate a problem-meaning no pain. So we have to go back every 3 months for the next 4 (yes 4) years. If left untreated, Uveitis can cause some serious problems so we have to be vigilant. The doctor didn't have the results of her ANA (that's a blood test for auto-immune diseases like JRA and Lupus-'It's not lupus! It's never lupus!-Quick, who says that?) so if he gets the result and it's normal, then we can go every 6 months instead. So for now, this is awesome news! Hopefully when we go back in Aug, we'll be able to keep saying that!

It's All In The Eyes....

Self Portrait

Do you see these pretty eyes? They're beautiful, huh? We're going to go get them looked at tomorrow. There is a condition associated with JRA called Uveitis which causes inflammation of the eye. So we're going to a pediatric opthamologist to have it all checked out. Wish us luck and think swell-free!

Specialists...

Now that we have a more firm diagnosis for Siobhan, we are into the realm of seeing Doctor's who refer to themselves as 'specialists'. To me that sounds like a military team or a pretentious repair man. Maybe a just a pretentious doctor? I'm sure for the most part, they're not pretentious, it just sounds that way sometimes. Especially when you find out that their schedules are super exclusive! When I had to call the pediatric ophthalmologist at Primary Children's Hospital, they were all, 'Okay, the soonest I can get her in is July 12....lets see her then.' And I was all like, 'Um, I think we'll call the other referral.' The other place was able to get her in on May 24th. So I called yesterday morning to make the appointment with the rheumatologist and they said they didn't have a referral from our Doctor. So I called him (let a message, 'cause that's how docs roll) and let them know that they needed to send a referral. When I found out the referral went through, I went ahead with the process of scheduling the appointment. The nice lady on the other end of the phone line was all 'Why don't we see her on June 30th.' Hmmmm, Dr. W wanted her seen this week so that wouldn't work. But he did offer make calls and pull strings to get us in sooner. So I took the appointment just in case and had Dr. W use his connections. I found out today that they were able to get her in next Wednesday because they had a 'cancellation' that didn't exist 14 hours before. See what I mean, exclusive!

I wonder if making a donation is the medical equivalent of shaking a maitre d's hand with a dollar bill hidden in your palm.


****I feel the need to include the following disclaimer....I really do love Doctors and our pediatrician is especially awesome! Most of my above comments are in jest.****