Tuesday, September 11, 2012

Uveitis, Pauciarticular JRA diagnosis and next steps...

Saturday, September 1st.

Friends and family,

I have noticed some changes in Lucianna's eyes over the past few days, she has had redness and just a cloudiness about them that didn't seem quite right. Knowing that Uveitis,{"U-Vee-I-TIS"}, a condition associated with JRA, whereby the inflammation attacks the eyes is a very real concern, I decided to get her an appt right away. Her Dad took her this morning. She has Uveitis in both eyes. The news has hit us like a freight train and we are currently trying to process what this means for us and her. Learn more:
How Juvenile Arthritis Affects the Eyes?

I don't think I ever allowed myself to believe that she would get Uveitis, although I tried to keep it in the back of mind. Today, all that changed.

What we know so far:
The eye medication should get her inflammation under control. That said, the drops used to treat this condition are incredibly strong and do not come without their own set of side effects. There is just nothing okay about this eye disease and I can't sugar coat the serious nature of it.

The pediatric ophthalmologist has prescribed two types of eye drops, one that must be administered every hour, yes, every hour....until Friday. The other drop will be given every night before bed and we are told that particular drop will burn. I have no clue how I am going to get these drops in her eyes without her Dad's help on the nights that he works. It will be a learning experience that I will couple with M&M's & jelly beans to aid in my success. Luckily, Dad has taken off work tonight so that we can regroup, figure out what this means and just be together as a family. Today has been very hard emotionally for us.

So now she is officially diagnosed -(this diagnosis could change if she develops any other joint problems between now and December), she has Pauciarticular Juvenile Rheumatoid/Idiopathic Arthritis. (JIA/JRA acronyms are basically one in the same.) What does that mean? Her biggest burden will be her eyes and keeping them well. The arthritis will be her secondary problem and we may see it become less and less bothersome - however, her eyes will need more and more attention and careful monitoring.

Lucianna will go back to the eye doctor on Friday for a follow up to see how she is responding to the drops. If her eyes aren't under control by Friday, they will take the next steps in treatment and monitor her all next week. (This means several visits to the eye Dr's, possibly daily visits through next week, until it's under control.)

That brings us to Methotrexate, (MTX). JRA is a vicious disease that can wreak havoc on her joints causing a great deal of pain and deformity if left untreated. MTX is a powerful drug and comes with its share of side effects that would make any parent cringe to have to make this decision to put their child on it. Bottom line, the JRA needs stopped...the MTX is capable of doing that. We will begin this drug next week. It is considered a "2nd line of defense", (the Naproxen was the 1st line of defense). This drug is a "DMARD", disease modifying antirheumatic drug. It is described as a drug that knocks JRA over the head, over and over with a baseball bat until the JRA finally falls down to the ground.  This DOES NOT mean it will never come back again.  MTX will treat her arthritis and help her eyes. The benefits of MTX do outweigh the burdens - as scary of a drug as it is. Most kids have great success on it. We hope she does well with it and tolerates the "oral form" well so that we don't have to inject it. You can read about it here:
Methotrexate for treatment of JRA. Normally we would have started the MTX today but she needed caught up on one vacinne (the MMR), and should get a flu shot before starting it. She was at the pediatrician's office this afternoon getting both those shots to prepare her for the MTX which can be started one week after the immunization. (Poor kid.) Once we start MTX, she will likely be on it for 6 months to a year. We also need to keep her relatively healthy so that her already compromised immune system can fight without anything else bringing her down. (Luckily she only has one other little girl in her class at school so not a ton of sickness exposure.) --small blessings--

So that's where we are. I am still in the "why us" phase but in day or so, I will get my game face on and keep up this fight. I will try to educate myself on Uveitis, MTX and Pauciarticular JRA. We will continue to do whatever means necessary to aid in Lucianna's comfort. And....we will not forget that Bella, our healthy child, needs love and attention too. Thank you for all your support and well wishes.

I will post another update as soon as I have something new to share.

Lucianna's Proud Mama

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