Christine Schwab recently contacted me just as I was about to publish ‘A Special Determination‘ where I briefly wrote about my husband and his experience with children’s arthritis. As most of you will have noticed, I usually write about our community rather than what goes on in my own life. There are two reasons for this… I’m fairly private now, I’m sure that we could all write a book about our life’s experiences but I’m sick of talking about myself and secondly (the main reason!), LeanOnUs isn’t about me – LeanOnUs is about “Us” – our community. I just happen to run the website!
Anyway, on this occasion, I was prompted to write as we got a shock last week when Adam’s older brother popped round. During the conversation he said that they had expected Adam to be in a wheelchair by the time he was 21. Yes, it was a shock. I’ve always known that Adam suffered pain and had experienced arthritis as a child (they had him sleep in splints for 2 years when he was 10) but because of Adam’s attitude to life and fight to remain sporty we just joked that I would be pushing him around in a wheelchair when he reached 40 and that we’d have fun in the meantime. By the way, he hit 50 this year and still isn’t in a wheelchair. Very lucky and DETERMINED. You can read ‘A Special Determination’ yourself but it was interesting that Christine wrote to me just as I was about to publish my story.
In brief, Christine wrote ‘Growing Pains… Reality or Brush-Off?’ which I know many of you will find interesting. I’ve shared an excerpt below and encourage you to pop over to her Facebook page ‘Christine’s Kids‘.
GROWING PAINS… REALITY OR BRUSH-OFF?
Since starting my Christine’s Kids Facebook page over a year ago one topic comes up over and over again. The proper diagnosis for Juvenile Arthritis. When I recently posted the Facebook question, “Growing Pains?” the amount of answers was surprising and they all had to do with the same issue. Doctors were disregarding parents concerns over their child’s aches and pains with the simplistic answer, “It’s just growing pains,” often delaying the proper diagnosis for months, even years. By now we all understand that diagnosis is imperative to treating Juvenile Arthritis because once you get the proper diagnosis you can start the medications and treatments. The goal is to prevent damage before it starts because damage is irreversible. A good doctor will diagnosis this disease and get started, even if the definitive blood work is not showing up early. As an adult I was one of those whose blood work did not indicate that I had Rheumatoid Arthritis but my doctor looked at all the symptoms and said, “It’s not showing up in your blood work yet but I am taking an educated guess, I think you have RA.” All the other symptoms were there and his educated guess turned out to be correct.
Doctors understand the need for defining the disease and finding the right medication. They also know that this often takes time because each child or teen is different and reacts to medications in their own way. It’s a roller coaster of treatments from the get-go. One medication will work on the joint pain but cause other side effects. Another medication might have a milder side effects but doesn’t alleviate the joint pain. And it rolls on and on until hopefully the right answers come along.
The Mama Bears, as I like to call JA moms because they are so diligent in finding answers for their children, responded to my Facebook question, all slightly different and yet very similar.
“We were told it was growing pains by four different doctors.”
“I was told by a rheumatologist to ignore my son when he wakes up screaming in pain.”
“I was told that our daughter was allergic to being sick, high fevers, rash and joint pain but normal for blood work.”
“My doctor said my child was spoiled and just wanted attention.”
“After waiting three months for an appointment, our child was put on high dosages of steroids because they couldn’t find anything wrong even though her knees were swollen and she can barely walk.”
“The doctor sent my son to physical therapy.”
“When my child stopped walking and went to crawling a nurse told me she needed a new pair of shoes.”… read more