Monday, July 17, 2017

Older and wiser

Here we are - back again.  I won't spend a lot of time catching you up over the last 3 were taken, people died, people got married, etc.  Just not all in the same trip...although Key West was a bit crazy. 

I am resurrecting the blog partially because it's an awesome way to keep track of the kids' day to day events, but also to pass along information.  I thought about putting this all on Facebook and then thought - ugh.  I'd rather save the funny cat/dog videos for that outlet.  Here, you can choose to read it or not.  At least it's a way to keep family and friends in the loop.

As some of you know, Katie has struggled with a swollen knee since about 2010.  Yes, 2010.  You can read more about it in a post HERE.  It was basically a cluster-fuck of information.  Some useful (as it turns out) some not.  It was a lot to deal with at the time and thankfully Katie wasn't having regular pain.

Fast forward to 2017.  Katie had been complaining of knee pain off an on again for the past few months.  John and I decided that we needed to reinvestigate this again, but were unsure of where to start.  I took Katie to my chiropractor first to see what their opinion was of the situation.  They said there was a lot of swelling and did not feel like the manipulation they would perform would be a good idea until we spoke with an orthopedic surgeon.  His father-in-law, Dr. Bob, was a retired surgeon and so a week later we met with him.  X-rays were taken and he agreed there was a lot of swelling.  He worried that there was a torn meniscus that could be the cause of her pain.  An MRI was scheduled to evaluate the function of the knee.

A week LATER we met with Dr. Bob again where he went over the MRI results.  The good news was that the knee function looked good - no torn meniscus, no broken cartilage.  He felt that we needed to be evaluated by a pediatric rheumatologist next because the swelling presents like arthritis.  He spent 45 minutes getting us phone numbers and a list of labs that would need to be done prior to the appointment. 

Labs were taken and the biggest red flag was that ANA (Antinuclear Antibodies) was positive as well as the Rheumatoid Factor (RF).  We went to see the rheumatologist on July 10th and Katie was given the diagnosis of Juvenile Idiopathic Arthritis (JIA).  All her joints were evaluated - twice.  More blood was drawn.  We spent over 3 hours there, but it was very productive.  The doctors and nurses at the U of MN Masonic Children's hospital are unbelievable!  They were so patient and willing to answer questions as we were trying to understand what all this meant. 

First step was getting her on some aggressive drugs - then to do a steroid injection into her knee.  They suggested that she be put under general anesthesia for that one. 

Her rheumatologist also wanted an MRI done of Katie's jaw as soon as possible.  It appeared to her that there was inflammation present and she wanted to see how affected that area was.  There is a more aggressive form of JIA that affects the jaw and so I assumed it was to evaluate that.  We were back at the U last Thursday for her MRI where Katie received her first IV!  She did amazing.

Bad news is that the MRI showed inflammation on both sides of Katie's jaw - with her left side being much worse.  We meet with the Dr. on Wednesday to discuss those treatment options. 

Are you ready for some good news?    Kids with this form of JIA are at risk to develop a vision threatening eye inflammation called uveitis.  They need screening at least every 6 months because the inflammation shows NO symptoms until considerable damage has been done.  We were at the ophthalmologist this morning and he saw NO SIGNS of inflammation!  Cross that sucker off the list.

Back to the meds....Katie had never swallowed a pill.  She is now a pro at swallowing the small ones with water and the bigger ones with a tiny bit of applesauce.  She takes 2 Naproxen Sodium (generic Aleve) pills every day along with a prescription of Folic acid.  Once a week she takes 5 methotrexate pills.  Once a few weeks have gone by and those build up in here system a bit more, they are the ones that have the possibility of causing side effects including fatigue, nausea, loss of appetite, and a few others that freak me out far too much to type. 

So now we gear up for Wednesday - another IV and sedation.  I wonder if they'll offer to sedate John and I as well.


Drew Kluesner said...

:( Hope Katie is taking the news OK. I've always had bad knees (and gout/arthritis/chrondomalacha/etc), and its never good especially at her age. Keep her spirits high, and try to find ways to cope with it to the best she can.

when life gives you lemons.. make lemonade! (just gotta find the recipe first)


Janet Boie said...

I'm so sorry to hear she's been going through this! Sending good thoughts to all of you!

Janet Boie