Meth Mondays

It's a "Meth Monday" here in the Pladsen house.  Mondays mean Katie gets to take 8 pills instead of her regular 3 every day.  These pills are really very easy for her to take and so far we haven't had any side effects.  (Knock wood)

The blue ones are Naproxen.  The bigger yellow one is the Folic Acid and the 5 mini ones are the Methotrexate.  If I were pregnant I would have to hold those Methotrexate pills with GLOVES on.  If my skin touched them I would have to wash my hands immediately because of the severe danger of birth defects.  You'll see there were no gloves....ergo....no Pladsen baby.

If a woman wanted to have a baby she'd have to be off Methotrexate for 6 months before even attempting.  Obviously it can't be taken while pregnant and there are mixed results on breastfeeding.  So we'll worry about that much, much later.

The injections went well.  She ended up having to be awake for her knee, which she was NOT thrilled about.  The doctors were not comfortable transporting her between procedures while under anesthesia.  Her knee had to be done in one room using a special x-ray machine and her jaw injections had to be done in another room using a special ct scanning machine.  I was able to be with her during the knee procedure and while she went under general.  I'd rather her not have to go through either of those things again, if possible. 

Friday night when we got home we picked up Chinese - Katie's favorite.  Unfortunately her jaw was so uncomfortable that she really couldn't eat anything.  She said it sounded like Velcro whenever she moved it around.  The anesthesia made it difficult for her to sleep that night, but there hasn't been a problem since. 

Now that it's been a few days we don't really see much improvement and she says it still feels "uncomfortable."  Her rheumatologist felt that her knee would be fairly stubborn, so it's not too surprising. 

For now she just keeps taking the pills and we wait for our next appointment in August. 

I think the next entry should be an update on Will!!

Friday's procedure

Originally we had been scheduled to have Katie's knee injection on Wednesday.  However, once the radiologist and her rheumatologist looked at her jaw MRI from last week, things changed.  They found that Katie has increased synovial fluid on each side of her jaw.  The left side is fairly significant and has enlarged temporomandibular joint space.  Here's what they sent to us in BOLD:

"While there is synovitis in both temporomandibular joints, marked on the left and moderate on the right, the findings appear much more severe on the left, with a short condylar neck and a markedly deformed condylar head with a poorly developed condylar fossa suggesting long-standing inflammation and abnormal development."

Perfect, just what every parent wants to read.  There are a lot of words that I have very little hope of understanding in that paragraph, but even my mathematically centric brain knows what "inflammation and abnormal development" mean.  That damn inflammation has been there long enough to affect the bone and to begin deteriorating tissue. 

They absolutely didn't want to wait and do injections in her jaw later - they wanted it all done at once.  So tomorrow at 1:00, Katie will have steroid injections in both sides of her jaw along with her right knee.  She will still be under general anesthesia. 

Here are her knees today....you can see that the one on the left (her right) is a little larger...about .5 inches larger to be exact.  That's all synovial fluid. 

 

 

Can't get you a picture of her jaw. 

 

Due to the inflammation present in her jaw - they were able to officially label the type of JIA that Katie has.  Ready?  Let's sound it out together....

 

Rheumatoid Factor Negative Polyarticular JIA



Good job.  Now here are some "fun" facts.

• It affects 20% of kids with JIA
• More common in girls
• Affects joints on both sides of the body - including neck and jaw
• Risk of eye disease
• More likely to last into adulthood

So that's it for now - after the injections (in a couple weeks) they want x-rays of her hands and elbows.  If the medications are working we'll see improvement.  If they aren't working, then we move onto injections at home or infusions.  I'm not spending much time thinking about that - one bridge at a time.

Older and wiser

Here we are - back again.  I won't spend a lot of time catching you up over the last 3 years...vacations 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.