Review, Relief, Reflection, and the other “R” Word

Review

E and B: Both have JA

This last year and a half has been pretty crazy. I was like 52 weeks pregnant with Ev when E was diagnosed with Juvenile Arthritis. When Ev was 8 days old, Ell was put under to have a cortisone injection in her knee. Then the physical therapy began. A few months later she started taking injectable Methotrexate orally to try to reduce the inflammation in her right hand. Then the occupational therapy began. Soon we had to switch to injections and double her dose.

And we waited.

E giving her bear a “boo boo shot”

She endured weekly shots and bimonthly blood draws. Dr’s appts. Pneumonia thanks to her suppressed immune system.  Methotrexate hang overs. Night terrors. Break downs: “Please, PLEASE don’t DO THIS TO ME!” on shot night. For nearly a year she barely grew or gained weight. Her body was too busy fighting and attacking itself to grow.

And then she started to put on weight.

She passed the 36 inch mark.

Her fingers looked less puffy.

E watching Cartoon before the MRI

Her rheumatologists were pleased with her progress but they were unable to tell for sure if she had any inflammation in her fingers. Two of her fingers are obviously bigger than the rest but it was hard to tell if it was just bony overgrowth from past inflammation or if she still had something going on.

So…..they ordered an MRI.

6 weeks later we were back at Lucile Packard for the procedure. Ell had to be put under because of her age. This was nerve wracking….she didn’t do well last time coming out. They had her for an excruciating 2 1/2 hours. Thank God for the iPad and the Kindle.

Then…..1.5 weeks later…the results.

Her MRI was NORMAL.

Relief

Nearly 18 months after her diagnosis…she was finally inflammation free! Her physical exam showed no signs of inflammation in any other joints. Honestly….we were shocked. We expected to be learning how to administer a new medication that day….not leaving with good news. We were cautiously relieved. Cautious because this disease can be tricky.

The “R” Word

One of the biggest myths about JA is that children grow out of it. Unfortunately…JA is an autoimmune disease and you don’t simply grow out of it. What you hope for is remission. First, a medicated remission (no active disease while on medications) and then…then you hope for non medicated remission.

Right now, Ell has no signs of active disease while on her weekly injections of methotrexate. If it stays this way for 6 months we will talk about when we can start to slowly wean her off. This is both exciting and terrifying at the same time. As much as I HATE (and I mean HATE) injecting this toxic drug into my baby every week…I am also terrified of the disease coming back. I am terrified of it getting worse. E’s case is so very mild compared to so many…but it is still my baby and I want her healthy.

So that is where we are now. We will continue with her meds and go back in three months!

Reflection

E and Daddy

As much as I hate this disease, JA has brought a lot of positives into our lives as well. When E was first diagnosed, I started researching E V E R Y T H I N G I could. The doctors had mentioned methotrexate as a possible medication and so I googled and read everything I could. When doing so, I found some Youtube videos of a beautiful young girl, J, getting her injections and talking about her life with JA. I didn’t have a Youtube account, but I created one that day so that I could send the mother a message and see if maybe she would talk to me about this disease.

You see…you find yourself feeling pretty alone when your child gets sick with some disease you knew nothing about….and all you want to do is learn everything you can about it and talk to people who have been there.

To my surprise, J’s mom messaged me right back. She answered all my questions and more. Our stories were actually eerily similar, just a few years apart in time. She invited me to join a support group via Facebook for parents of children with JA and soon I wasn’t feeling so alone anymore. I also learned just how serious and even deadly, this disease can be. I learned just how mild E’s case really is. There is a form of this disease called Systemic JA, also known as Stills Disease, that can be very scary. These children are very sick as their organs can become involved, including the heart and lungs.

I have met (both in real life and online) some amazing people because of this journey with JA including several other little girls around E’s age with JA. It was also given us perspective…how thankful we are that E is not worse but also how thankful we are that Everett is healthy. It has been a rewarding, humbling, joyful and painful journey.

One of those amazing little ones that we have had the privilege of meeting just a couple times, happens to have the severe type of Systemic JA. She lives locally and we have met because of our local Arthritis Walk. I recently learned that “L” has been hospitalized and has been very sick. I can’t stop crying as I think about that sweet girl having to fight so hard to just to walk and play.  Please, please please keep “L” and her family in your thoughts and prayers. They need it.

And so…here we go holding our breath for three more months! Hoping that this little girl stays healthy…

Cheers!

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About Katie

Katie is a licensed, credentialed and certified pediatric speech-language pathologist and mom to three (5, 3 and 9 months). Her passion about educating, inspiring and empowering parents of children with all abilities led her to start her blog Playing With Words 365 where she shares information about speech and language development, therapy ideas and tips, intervention strategies and a little about her family life too. Katie has been working in the field of speech pathology for 9 years and is certified in The Hanen Centre’s It Takes Two to Talk ® and Target Word ® programs and holds a certificate in Applied Behavior Analysis (ABA). In addition to blogging and being a mommy, Katie works part time in her small private practice in the San Francisco Bay Area. You can follow her on Facebook, Pinterest and Twitter.

Comments

  1. Jenna Rayburn says:

    So happy for E’s good news! What a blessing!

  2. This is SUCH GREAT news!!! I’m so happy for you guys and so glad for Esella! She’s such a brave little girl <3

  3. This is best news I have heard all week Katie! I hope the worst is behind you!
    Kim Rosas recently posted..How to Prep Cloth Diapers: Your Questions AnsweredMy Profile

  4. Hooray! I am SO SO SO happy to hear the MRI results! I know exactly how you feel right now.
    We go back to the rheumy in a month, and if Em still has no active arthritis she’ll be considered in medicated remission. I’m holding my breath but trying not to think about it at the same time. It’s all so crazy.
    I’m praying for out little girls and hoping that this disease stays away for a while to give them a good chunk of a “normal” childhood.

  5. E we love you and are SO glad to hear the good news! We have to get the girls together soon! :) Your in our thoughts and so is L!

  6. This is such a touching story and you are all so brave, all the best and good luck for the future, you are in my prayers!
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