The start of our Juvenile Arthritis Journey

Hi there,

If you landed on this article and clicked it, then chances are someone you know is suspected of having or was recently diagnosed with Juvenile Idiopathic Arthritis.

I am sharing our story because it is a difficult disease to comprehend and diagnose. Our stories are all so varied. Please feel free to reach out to me with any questions or if you just want to chat with someone that understands.

Herchel ([email protected]) 

2011

The morning started out like many other pre-Juvenile Arthritis Saturday mornings. My three-year-old son and not yet two-year-old daughter romped around in the living room for most of the morning.

Near naptime, they settled in to watch Pajanimals for a few minutes before drifting off.  Pea built a nest with her blankie and pillow in front on the tv like normal.

She rolled over to get more comfortable and let out an ear shattering scream.

Leaping to her side and picking her up, I asked her what was wrong. She lifted her leg like a flamingo and refused to put weight on it. Since I had witnessed the whole episode and did not see her do anything to injure herself, I simply cuddled her on the couch.  Her sniffles stopped as she rested in my arms and fell asleep.

A few hours later, she roused and pushed herself up to toddle towards me. Another scream ripped through her as she put her weight down on her right leg again. Off we went to the emergency room.

After x-rays that revealed nothing, the ER doctor decided to wrap her leg in a soft cast and refer her to an orthopedic pediatrician. He explained that with a child so young and as small for her age as Pea is sometimes the x-ray doesn’t immediately show hairline fractures.

She was in the soft cast for a few weeks.

Little did we know, our journey with Juvenile Arthritis was just beginning….and since she loved having to be carried everywhere….a diva was born!

After the removal of the cast, the normalcy of life with two toddlers returned.

Until, that is, the screaming started again.

It took two years to get a diagnosis. There were months of toddling punctuated by weeks of refusal to stand. Some of the specialists that we saw thought I was crazy. I would talk about her episodes of refusing to stand, while she raced around and played in the doctor’s office besides me. The pain episodes always ended before the specialists could see us. Of course. At several points, I thought I was crazy. I questioned whether Pea was just “playing me.” I questioned whether I was one of those women who needed to care for a “sick child” to feel a purpose in life. I questioned whether I was spending money we didn’t have chasing a diagnosis. I questioned if my stress was why she would wake up whimpering in pain in the middle of the night.

Then one day, our pediatrician saw physical evidence of Pea’s inexplicable refusal to walk. Her right thigh was swollen. As she got older, the swelling of her knees became visible. She matured and learned to vocalize her pain. We found the right pediatric rheumatologist and the right (for now) treatment.

I wasn’t crazy. It wasn’t in my head. The problem was in her and her over active immune system. Juvenile Arthritis is an autoimmune disease and it’s real.

While her disease is real, it is also considered an “invisible” disease. My special needs child is not easily recognized as having special needs since her symptoms and disability are not outwardly visible. Nor are they consistent. And this started our journey.

Related:

The beginner’s guide to helping your young child cope with chronic pain

Operation: Perspective

How to face the uncertain future as a special needs parent