When do you NOT accept the diagnosis of growing pains?
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.”
“My son was already diagnosed with psoriatic arthritis. When we took him to the ER for severe pain we were told it was growing pains.”
“At sixteen I started getting joint pain and was told by several doctors that it was just growing pains.”
“As a grandmother with RA I recognized my Granddaughter might have JA when she started limping as she learned to walk. It was hard convincing the doctor.”
“When my child was 16 months and not walking I was told ‘Some kids walk later than others.”
“My son was diagnosed with a sprained knee. Six weeks later he was diagnosed with systemic arthritis.”
“We were told our 4 year old had a Pain Syndrome and it was all in her head and she had learned to behave this way.”
“My daughter had knee surgery to repair her knee, only to find out two months later it was JA.”
But it doesn’t stop with the medical world. Teachers and school kids define JA as “your just lazy, “ or “you’re a sissy who doesn’t want to play sports.” Children have been bullied and humiliated because they can’t participate in activities when in reality if they do participate and work through the pain they can do irreparable damage to their young bodies.
And it goes on and on, kids not crawling, walking or running. Kids complaining of pain in their joints. Swollen, hot joints hurting. Fingers not able to move properly, feet not supporting toddler’s legs. Yes, there is indeed “growing pains,” and many children experience them, but growing pains usually go away quickly. They usually don’t last for weeks or months at a time. They often don’t slow kids down, they just ache.
So when do you not accept the diagnosis of “growing pains?” From my experience as an adult with RA and my conversations with mothers and JA children, the best advice I have found is to use your instincts. Be pro-active. You know your child. You know when they are using growing pains as an excuse vs. not being able to walk. And if you are in any doubt, get to the bottom of the issue. It might take two doctors, it might take six, but whatever it takes you need to find out what is causing the pain.
Our parents lived in a world where the doctor’s word was gospel. Because of the Internet and television we don’t live in that world anymore. We go online and read; we buy books and read; we watch medical reports on the news and we listen. We talk to other parents, and we compare notes. Our generation is not one to take any word as gospel if the symptoms are not improving.
I have had many doctors in my life dealing with my RA. Some good, some mediocre and some excellent. If I were a Mama Bear you can bet I would be aggressive. I admire the Mama Bears because they look after their young. They know when someone is just placating them. They also know when someone cares. They don’t stop until they find the caring and competent combination in a doctor.
You might take “it’s only growing pains,” as an answer once, maybe twice, but after that
you need to check it out. You need to see other doctors. If I have learned anything in medicine at all over my 25-year journey with RA it is that we have to be at the helm of treatment. Nobody cares as much as we do. Nobody will work as hard as we will to find the answers. That’s what Mama Bears do. That’s what smart people do.
That’s the wisest thing to do. Never take a cliché as the truth if you have any doubts. Never, ever give up.
It’s the job of a Mama Bear to protect her young.
Christine’s Kids on FaceBook: http://ow.ly/8HVtU