The "Daddy's Home" Phenomenon

If you are a mom, especially a stay-at-home one, you know exactly what I'm talking about. All day, one or more of your kids has been a complete terror and you are at your wits end. You've given your husband a play-by-play throughout the endless hours he's at work and beg him to come home at warp speed! Then miraculously as soon as he walks in the door your child becomes the sweetest little angel  to ever walk the earth and you look like a big, fat, lying, drama queen. Yep. That's what happened to me today....

With Ryker getting the steroid injections yesterday, I was eager to see how his usual joint stiffness would be this morning when he got up. Not to worry, he hopped right out of bed like he had never had a problem. He started walking towards the potty like he hadn't a care in the world... and that is where the tide turned. In my haste to see how his joints fared I forgot to bring a fresh pull-up with me. Sometimes he stays dry through the night, but more often than not he needs a new pull-up and sometimes a new set of jammy pants. As he made his way to the upstairs bathroom I informed him that we needed to use the potty downstairs because I didn't have a pull-up.

ALL HELL BREAKS LOOSE

The kid doesn't like his routine messed with... I get it. He obviously gets that from me but... come on! It's the potty for crying out loud! I had to carry him kicking and screaming down the stairs (while 18 weeks pregnant) and then spend the next 5 minutes convincing him to sit on the potty. Needless to say the day continued to spiral out of control from this point forward...

He was moody and aggressive. The littlest thing would set him off crying and he wouldn't be able to stop for 15 minutes despite my best efforts to bribe or distract him. At first I thought he might still have anesthesia in his system from yesterday; then, I was convinced he was just being a two-year-old. After he hit me a few times and then tried to bite me I chalked his extremely unusual behavior up to the steroids. That HAD to be it. No way did my sweet, fun-loving boy become a defiant naysayer overnight. Not to mention he was completely eating me out of house and home! The rheumatology nurse practitioner agreed with me later when she called to check on him. But honestly, it didn't matter why he was acting that way.... I still didn't know how to deal with it! Am I supposed to just give him a wide berth? be extra patient? or treat him like nothing is out of the ordinary and reprimand him for every single indiscretion? I spent the entire day trying to make an "action plan" and second-guessing every decision I made. This has pretty much been my "mommy life" for the past two months..... My baby is sick and I want to comfort him and let him do whatever makes him feel better.... but I also don't want him to be a brat! He's probably utterly confused because some days I'm extra lenient and other days I'm super strict. Today I had no patience at all which I always feel super guilty about when I'm laying in bed at night. Where do you draw the line? How do you know when they are acting out because they feel bad versus when they are just testing the limits? It is a conundrum I fear I will be facing for an inevitably long time.... Blek!

Anyway, by the time Justin got home I had passed my breaking point. We ate a quick dinner, I wished him luck, and then I escaped to the bath tub! Imagine my surprise when I return from the bath only to hear how happy he has been the whole time and how he asked to go to the potty. WHAT?! You have got to be freaking kidding me! I have done nothing but fight with that kid all day about going to the potty. Unbelievable!

I don't understand it.
I probably never will.
Scientists should study it.

In the meantime, I'm going to use the explanation that the steroids had started to wear off by the time Justin got home and therefore Ryker's mood swings had stabilized. That sounds plausible right??

Ready for a Plan

First things first, we had a great trip to Florida. It was nice to have extra helping hands and luckily Ryker did REALLY great on both airplane flights.
*Side note - the best advice I ever received about taking a toddler on an airplane: invest in a few new toys/activities they have never seen or played with before. We've used this method multiple times and it always circumvents a meltdown!*

Anyway, the bottom line is, we are ready for a plan of action. We are accepting that Juvenile Arthritis is most likely his diagnosis and we want to start down the path of treatment. We are scheduled to see the rheumatologist in 6 days and my anxiety is increasing by the hour. The only positive thing I can really focus on right now is that the weather is getting warmer and that is helping Ryker's joints.

I'm pretty certain that the arthritis is affecting his jaw. He doesn't want to eat very much (which is extremely unusual) and when he does eat he only wants soft foods like applesauce, bananas, sweet potatoes, pasta, etc. I am definitely going to ask her about this when we go next Wednesday; he has lost 2-3 pounds since all of this started last month. Some other questions I will be asking are...

- what does it mean that his onset is so early in life?
- how long can he stay on meloxicam?
- how much should we limit his activity when he doesn't understand how to limit himself?
- are swim lessons an appropriate activity?
- any special vitamins he could be taking that might help?
- does he need physical therapy?
- genetic component? what is the likelihood the baby I'm pregnant with could get JA?
- should I expect him to have random fevers and/or rashes? swollen lymph nodes?
- when do I call the rheumatologist versus the pediatrician?
- should I make him go up and down the stairs?
- how often should he go to the ophthalmologist? what is the likelihood he will develop uveitis?

I hope we get a lot of answers and a game plan when we go next week. I am so thankful we have a great hospital like Scottish Rite in our own backyard.

Spring Break

It seems things have leveled out a little. Ryker has good days and bad days - the more active he is, the worse his knee swelling gets. I try to limit him to twenty minute increments of activity and then make him sit down and rest. The doctor said to let him limit himself but he doesn't understand cause and effect! He doesn't understand that just because it doesn't hurt right now doesn't mean it won't hurt later! It's heartbreaking really. I want him to be able to run and jump and go crazy like every other two-year-old. We are really lucky that the teachers at his MDO program have been so understanding and wonderful. They help limit him while he's there and communicate so well with me about symptoms they observe. We are pretty much convinced he does have inflammation in his fingers because he really doesn't like washing his hands in cold water and he seems to be having trouble holding his fork/spoon. After researching JA I'm starting to accept that might be what he has. I'm also concerned that it might be affecting his jaw. He's had trouble chewing and taking bites for a long time and I never really knew what to make of it. I thought he was just impatient and wanted to cram the food in his mouth as quickly as possible.... now I'm thinking it's probably something more. Why didn't I bring it up to the pediatrician before? Ugh. I realize I really couldn't have known and maybe they wouldn't have found anything even if I had brought it up but it's like they always say: "hindsight is 20/20". All of his symptoms seem to come together so clearly now. It makes me feel like I failed him somehow....

My goal for the next week is to go to Florida for Spring Break and have a great time as a family. My guilt, anxiety, and worrying will not dampen our vacation!

Can't catch a break...

My poor baby can't catch a break! Both of his knees are really swollen and he can barely walk. I think the freezing cold weather is making it worse. He also has a sinus infection and ear infection. It seems like FOREVER before we see the rheumatologist again. I called and told her he seemed to be getting worse but she basically just said we had to wait it out for four weeks and then re-evaluate. Urgh. I feel so helpless! He's really stiff in the mornings and when he gets up from nap. This little heat pack I bought him helps some but not a lot - especially since it's below freezing outside. The Mobic is helping him sleep through the night but doesn't seem to be improving the swelling or stiffness. I guess we will just have to stay the course and continue to pray it goes away on its own.

Rheumatology Visit #1

Well I'm not really sure how to summarize today's doctor's visit. First things first, I am SO thankful we were able to get in to see a pediatric rheumatologist so quickly. Secondly, I really liked her. She took a lot of time to listen to Ryker's full history, do a thorough exam, and answer ALL of my questions. She is definitely concerned about the swelling in Ryker's right knee and how it is affecting his mobility. She also thinks he might have swelling in his right ankle and some of his fingers. She is hopeful that this could simply be a strange post-viral reaction but she is skeptical that it might be Juvenile Arthritis. I have to admit that as a pediatric nurse and someone who has quite a bit of personal experience with autoimmune disease, I do not know much about this diagnosis. I'm really trying not to get ahead of myself though. She put him on meloxicam (Mobic) which is a different anti-inflammatory to try instead of the Naprosyn. She wants us to give him that for 4 weeks and see if he improves. We will see her again on March 18. In the meantime she wants him to see an ophthalmologist to make sure he doesn't have uveitis which is inflammation in his eye; some types of Juvenile Arthritis cause this condition and she would rather be safe than sorry. So the waiting begins...

*Update: Ryker saw the ophthalmologist on February 20 and everything looked fine. Hallelujah!*

Synovitis??

After talking to the pediatrician, he thinks Ryker might have post-viral synovitis. A few weeks ago (on January 19th to be exact) Ryker ran fever for about 4 or 5 days and had a little bit of runny nose and cough. The pediatrician talked with a rheumatologist and they think his body might have just overreacted to the virus - causing swelling in his joints. They are putting him on a prescription anti-inflammatory (Naprosyn) and we are going to try to see the rheumatologist next week. I hope the Naprosyn works better than the every 6 hour Motrin.... it seemed to help at first but after a day or two he seemed to get worse again.

The Curious Case of the Puffy Knees

For a couple weeks now, Ryker has been having trouble walking.... He refuses to go up or down the stairs and won't even step off the little ledge in the garage. At first I thought he was just being a cranky two-year-old, but then he started having stiff legs in the mornings and when he would wake up from nap. Then I thought.... maybe it's just growing pains. As a pediatric nurse who worked with crazy neurological diseases, I try really hard not to overreact to things with my own kid.

Well... today I lost that battle.

Ryker got up this morning and could barely walk. Even after an hour and a half, when I took him to Mother's Day Out, he was still having trouble. I wasn't sure what to think! Maybe he just slept wrong? had outgrown his shoes? needed his toenails cut? It wasn't until he got to school and his teacher took him to the potty that I (and everyone else) knew something was seriously wrong. Both of his knees were the size of oranges! Now let me remind you that my child is only two years old and, although he has always looked a little like the Michelin man, his knees have never been (nor should they ever be) that big!

I FREAKED.

I mean... who wouldn't? More than anything else I felt an extreme amount of guilt. His trouble walking has been going on for a while now and it appears there is a legitimate reason behind it! I immediately called the pediatrician and got an appointment for this afternoon. After seeing the nurse practitioner and getting labs drawn, we started him on Motrin every 6 hours around the clock.... we even have to wake him up at night and give it to him. We are waiting on lab results and further instructions....