Wednesday, July 13, 2011

Little Trooper

I received an email from Angela about her daughter Amanda a couple weeks ago and it brought tears to my eyes. I admit, I'm an emotional person, but I don't usually cry after reading a story about someone I've never met. I think it was mainly because I could understand what they are going through so well.

Here's the story, written by Angela, about her tough little girl . . .



I have two girls, Jessica (13) and Amanda (5).  Jessica was the happiest baby ever, always smiling, never fussy, so much that we actually called her "Happiness" as a nickname.  (Now, she's a surly teenager who seems to think that her parents are total idiots, but overall, still a very good kid.)

Amanda, however, was the angriest baby ever.  She was born mad - always fussy, screaming, never happy.  When she was born, the plan was for me to stay home for a year or so to take care of her.  After six weeks, I told my husband I could not take it anymore and found a PT job (within a year, I was FT).  Amanda became considerably more agreeable once she could walk around and vocalize her wants, but has always been a stubborn little thing.  Love her to death, but she's definitely strong-willed.

Amanda at the Arthritis Walk in Atlanta, May 2011.

When Amanda was three, she said her foot hurt and she couldn't walk.  I thought she was faking because she didn't want to go to her preschool and dropped her off without a second thought.  When I picked her up, she was running and jumping with the other kids.  The next morning, the same thing happened and by day three I knew she wasn't faking.  We went to her pediatrician and they wanted to do some tests.

Leukemia was a stated possibility- I have never been so scared in my life.  After an MRI and several blood tests, we were referred to a pediatric rheumatologist.  We weren't even aware that children could get arthritis, and NO ONE in our family has arthritis!  It presented only in her right knee.  We tried Naproxen, to no avail, and ended up going to the Children's Hospital, having Amanda put to sleep, and having her knee drained and a local steroid injected.  This went on for a year and a half, with this procedure happening every six months or so.  After the procedure, you would never know there was a problem at all, her knee wouldn't bother her for a good 5 1/2- 6 months. 

During this time, we attended many JA events held in Georgia.  We listened to the other parents tell horror stories about holding their children down during painful injections, being on crutches, hospitalized, etc, and we thought we were soooo lucky that Amanda had such a mild case of JA.  We weren't lucky.  We were naive- and in the early days of the disease.  Amanda did get uveitis twice, which sucks big time giving eyedrops every 2 hours (the 3am ones were just pure evil), but overall her disease was easily managed.

Amanda, at Children's Hospital after having her knee drained and injected. 
Someone give this girl a choco-chip cookie, STAT!

This past February I started noticing Amanda's wrist swelling up- every other morning or so she would say it hurt a little when I touched it.  I told myself she was sleeping on it wrong.  Her knee was also beginning to bother her, we had an appt. with her pediatric rheumatologist in April, so I figured we could hang on till then.  I never mentioned the wrist to my husband, Tom, I just told myself it was nothing.  Her dr. had told us that if the JA remained in one joint, especially a large one like her knee, for two years, it was much more likely to go into permanent remission eventually. 

We were oinly a couple months from the two year mark.

In March, I attended the kick off meeting for the Atlanta Arthritis Walk.  The guest speaker was Zack, a 13 year old boy with JA.  Zach missed 57 school days that year because of the pain, was teased at school for limping and having to use crutches, and had considered suicide. He started crying during his speech, talking about how his friends with JA also suffer, and his dad, a police officer, came up and was upset as well.  It was heart-wrenching.  I called Tom from the parking lot and told him that I really thought the JA had progressed to Amanda's wrist.  He already knew, but hadn't wanted to tell me about it, either.  We were both in denial.

In 2009 at an Atlanta Juvenile Arthritis event. 
Who would guess this little girl was in pain?! Not me!

Despite my best efforts (calling a couple times a week to see if there had been any appt. cancellations), I could not get in to see Amanda's pediatric rheumatologist before April.  There are 9200 kids with JA in Georgia and FIVE pediatric rheumatologists.  It's beyond ridiculous (politically slanted rant on healthcare redacted).  When we finally did get in, on April 21st, we were told that the JA was presenting not only in Amanda's knee and wrist, but her jaw as well (she never complained about her jaw, we had no idea).  Because of the severity, we were told it would be best to start her on weekly methotrexate injections after labs were taken to establish a baseline (methotrexate can cause liver problems, as well as a host of other unsavory side effects).

I lost it in the labs, and another JA mom who happened to be there just sat and hugged me while I cried.  I was so scared, Amanda was only 4 at this time, so young to have a disease like this. 

Amanda and her sister Jessica on a cruise (heck yes!) December 2010

The shots were pure hell.  Amanda was petrified and had to be held down, screaming and writhing.  We found YouTube videos of kids receiving shots and Lyda's pictures of her own injections and showed these to Amanda, which helped alleviate her fear slightly. 

After a couple weeks, a co-worker told me about Buzzy the Bee, a device that is supposed to make the shots hurt less because it "confuses" the nerves (and it's wings are made of ice).  It has helped considerably, though Amanda still has quite a bit of anxiety about "shot nights".  The methotrexate hasn't helped yet, it's been about nine weeks.  I am petrified that the next step will be Humira, Enbrel, etc....she's such a little thing, what will these drugs do to her long term?  How many more joints are going to be impacted?

Happy Pre-K Graduation! May 2011

Despite the trials, Amanda has never complained about her arthritis- only about the treatments.  She is a very strong, tough kid, and I hate that she was to go through this.  It has encouraged me to find people like Lyda who are shining examples of how to live with the disease and not be "owned" or defined by it.  Amanda is a smart, funny, stubborn little kid who happens to have arthritis.  She starts Kindergarten in August, I am not sure how that will go, with her exposure to all the germs (while being on an immunosuppressant) and in a school that has never had a kid with JA before.  We'll see!



I want to thank Angela for sharing her story with us! (By the way, is she not one of the cutest little girls you've ever seen?) I know how hard it is to revisit the memories and the difficult moments but I know that opening up will help others out there going through the same struggles. I'll always be here for you and your family. 


If you want to be involved in our new RA Friends segment, send me an email at lydaclark.blog@gmail.com  

2 comments:

  1. May this precious little girl find some relief! Such a brave soul. It just breaks my heart when I hear/see or read stories like this about little ones. Just so unfair. May all the angels surround her here on earth and protect her through her jra journey.

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  2. from one Mom with a child (Lisette, 7) who was diagnosed with RA at 18 months old, I can understand. I have an older child who has Cerebral Palsy so when Lisette was diagnosed with RA, I thought- no problem, I can deal with that. But I never thought about the years of pain, experimenting with medications that may, or may not work, etc. Hang in there. We've made our way through this journey with love, faith and laughter.

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xoxo
Lyda