Yesterday was a long day. We were up way before the sun came up to head over to Stanford (a 1-1.5 hour drive from here depending on traffic) because E needed an MRI with sedation.
If you’ve known us a while- you likely know E’s story- but I have many new friends that we’ve made over the last few years who don’t know- or don’t know a lot- about E’s medical journey. One of the things I wanted to write about when I started this blog was about the issues that E has faced to help continue to spread awareness about her conditions- so this is as good a time as any!
E is our oldest child. Though all of our kids’ names start with the letter E, her name is the only one that starts with a long E sound, which is why we call her E.
(I am wondering how many of you reading this are realizing that you’ve been pronouncing her name wrong the whole time…it’s ok she’s used to it)
When E was just shy of her second birthday, she started to limp a little off an on. It was really subtle at first and would always go away- so we just figured she had pulled a muscle or something.
Then the day before her second birthday E woke up, jumped out of our bed, and proceeded to fall down and cry.
She couldn’t walk.
Justin went to change her diaper, and noticed she wasn’t fully extending her right leg. He gently pushed down on it and she screamed out in pain. He brought her into our room again so we could look at her leg and that is when we realized that her knee was quite swollen.
It was a Saturday. Off to the pediatric urgent care we went. They took an X-ray and did labs and told us it was probably just thing thing called synovitis, even though they rarely see it in a knee (it’s more common in the hips). However they were concerned about infections so they wanted us to return to the urgent care the following day- her second birthday- for a follow up- which is the picture below (isn’t she so adorable? And can you tell she and Edda are sisters!?)
On that second visit- the pediatrician on call wanted to take an x-ray of her OTHER knee to compare and also ran other labs. Then they wanted us to follow up with our regular pediatrician the next day- Monday. Basically they were trying to rule out things like infections and cancer.
Scary infections and cancer.
So, we headed home and tried not to panic.
That day I let myself google- and I did find a picture of a toddler who looked just like E with a very swollen knee and I read all about the disease that caused the swelling.
It didn’t sound good.
So we went out to dinner to celebrate E’s birthday with my in laws and waited for the morning to call to get in the pediatrician.
Oh hey- have I mentioned I was like 36 weeks pregnant with Everett? Yeah. It was November 28th and I was due December 24th with him.
ANYWAY- at the pediatrician we discussed different causes of joint swelling- including the diseases I had found googling- and the pedi said how and likely not what was going on BUT she agreed we needed to follow up on to so…MORE LABS.
And a referral to ortho.
The good news? All of E’s labs were perfect.
The bad news? She still had a swollen knee with no known cause. We got into ortho I think that same day? And she wanted us to do 10 days of Motrin around the clock to see how it responded. She also said the diseases I was about weren’t common and it was likely something else- possibly the synovitis the other doctors had proposed.
The Motrin brought down the swelling a bit and E was able to walk pretty normally for the 10 days. YAY!
And then the ortho told us to stop the Motrin.
Her knee immediately swelled back up and the limp was back.
That was when we got the referral to Stanford’s Pediatric Rheumatology Clinic.
And that is for next time…