I'm taking a public speaking class and I LOVE it...who would've thought?
My last speech was an informative speech and I chose to give it on Juvenile Rheumatoid Arthritis.
When we think about arthritis most of us think about old men hunched over, walking with canes or Grandma's who can't knit anymore because their hands are too crippled.
BUT, Did you know that over 30,000 children in the United States have been diagnosed with Juvenile Arthritis?
This is Hayden the day he was diagnosed with Juvenile Arthritis.
He was 3 years old.
Through my experiences the past 2 years and a little research I will tell you what JA is, the symtoms, the treatment and what life for these kids can be like. Everyone's story is different, but I will share Hayden's.
6 months before his diagnosis Hayden started complaining of pain. He wanted me to squeeze his hands and feet as hard as I could because it was the only way he could get any sort of relief. He quit dressing himself, feeding himself and playing with his toys. He really was in so much pain. The symptoms are pretty consistent. About a week before any symptoms at all, most kids get a rash and fever. Then a week later joints become red, hot, swollen and sore. Kids also become sluggish and tired.
This is how those symptoms are treated:
Our pediatrician sent us to a rheumatologist in Salt Lake at Primary Children's. She did a bunch of labs and then felt each of his joints. She told me that the best way to treat this is to be agressive.
The medication is enough to be a speech all it's own, but the medications include biologics, chemotherapy, NSAIDS, steroids, and then there are also medications to offset the side effects of those medications.
The side effects aren't fun for these little people.
Nausea, vomiting, exhaustion, mouth sores and orneriness.
Some of the more severe side effects are liver/kidney damage and cancer.
The hardest side effect is the compromised immune system of these kids.
Normal sicknesses require hospitalization or agressive treatment. When disease is active life is difficult for these kiddos. In school Hayden has a speech therapist, Occupational Therapist, and is in Life Skills. A lot of accommodations are made for him. If he can't sit on the rug he can sit on a chair, if that gets uncomfortable he can stand. When it's cold outside or we are having a red air day he has to stay inside for recess. When the arthritis is active he has special scissors, special pencils, and sometimes he can't even participate. He knows his body and knows what limits to set each day.
Before Hayen started school we met with an Occupational Therapist and I was so excited to get some tips. I was kind of hoping for a cure of some sort, but he gave me pracitcal advice. He told me things to do when the disease is active to make life easier for Hayden. We got these socks that have hooks so the kids can pull them up on their own, we got rid of pants with zippers, any clothing with snaps or buttons.
Our family life is affected as well. Hayden's meds with the worst side effects are given on Fridays so we hang out at home on the weekends. When the disease is active we skip out on trips anywhere that would make Hayden's joints sore.
Last summer we went to Bear Lake. I thought it was going to be great. Hayden was doing well and it was warm out. Everyone was having a blast until Hayen got in the water and his joints froze.
Life with this disease is very limiting, but remission is possible.
Remission is when there is no sign of disease in the joints, organs, or eyes for 6 months on meds and then slowly weaning off meds without any flare ups.
With the help of our amazing Dr, medications, therapists and teachers Hayden was able to play soccer last fall and just ran the 1 mile in the Jingle Bell Run which raises awareness for Juvenile Arthritis.
Arthritis isn't our grandparents disease!!!!!!
