This week I read a blog about kids with chronic pain that really hit home with me. Published on the National Pain Report, it stated that children with chronic pain are treated differently than adults and that they are often blamed when they don’t get better with physical and psychological therapy. That’s the opinion of Dr. Dr. Pradeep Chopra, who is an Assistant Professor in the Department of Medicine at the Brown Medical School and a nationally known pain management specialist and I think it’s spot on.
My teenager has chronic migraines (here’s another great article I read this week about that). They’re not little headaches, they are absolutely debilitating and painful and she has at least two a week. She also has dysautonomia; she can’t control her autonomic nervous system and more specifically postural orthostatic tachycardia syndrome (POTS), both of which are sources of pediatric pain. She’s had a concussion since August (more pain) that we’ve been treating with Vestibular Therapy. She’s also been spitting up blood for fifteen months and ten days, another painful condition because obviously she’s bleeding somewhere internally.
Last winter, Rosie was also diagnosed with Amplified Pain Syndrome (APS) and Allodynia, after I reached out to a Rheumatologist to help find the answer to why she’s spitting up blood. (For the record, I do think that APS is a real thing and that the treatment for it works. If that was the only thing we had wrong with us, I’d buy in a little more. Unfortunately, it’s not the case.) We were happy at first to get a diagnosis that made a little sense. If Rosie had Amplified Pain Syndrome, then it could explain everything and through exercise, physical therapy, desensitizing and seeing a therapist, she’d be cured. Great news, right? Not really because it didn’t explain why she was spitting up blood and the moment we got the diagnosis, both of us were treated differently by doctors, social workers and psychologists.
With APS, Rosie’s not supposed to use her pain as an excuse. She’s supposed to push through no matter how she feels and this theory applies to everything in her life- school, dance and social life. We were told that yes, her pain is real but she can no longer talk about it. We even got recommendations for school that she was to expected to attend full-time (which we found interesting since she’d been homebound for a semester), instructing her teachers to ignore her if she was in pain. We fought both the doctors and the school on the recommendations because it was physically impossible for her to tackle that challenge. She didn’t have the stamina. It took weeks for anyone to listen. In fact, I had to go around that team of doctors to our pediatrician to get the letter to shorten her day.
Here’s the thing. Once you’re diagnosed with a pain issue as a child, physicians blame everything that’s wrong with you on pain. You have a “pain problem.” So, last month when my teenager had a lumbar puncture and it leaked, we were told that “kids with migraines have pain issues and are more likely to have a LP headache” like that was a normal thing. She went eleven days before they gave her a blood patch. Right now, she still has blurry vision and we’re having trouble getting anyone to listen because of course, she has “pain issues” and it could be pain. It could also be something really wrong so maybe we should check.
Children with pain issues are treated completely differently than adults. If an adult with Fibromyalgia and a history of chronic migraines went to the ER for a migraine, they’d be treated right away. Now, our treatment is delayed by four hours until they believe that she actually has a migraine and it’s not just pain (this has happened to us twice). Even when I ask for IV fluids, they look at me askew. Here’s the thing, the migraines are not new. She’s had them for years and they run on both sides of our family so we know what we’re talking about. Please just treat us so we can go home.
It’s so difficult to explain to people how incredibly challenging life can be when you have a number of illnesses that cause pain. My child physically hurts much of the time. It’s hard her and it drains me emotionally to see her suffer. After she started spitting up blood, her life changed completely. She lost many of the things that made her happy. She can only attend school sporadically. She can no longer dance. She’s parted ways with many of her friends. Even with all of that, she still has a smile on her face. She still has hope, yet she’s frustrated because no one believes her when she says something’s wrong.
I have to confess, that I’ve even fallen into the pain trap. When Rosie first told me her vision was blurry, I told her it was just pain and didn’t listen. In fact, I didn’t get concerned until our Vestibular Therapist did. Yesterday, when she couldn’t go to school because she “felt bad,” I challenged her and told her she needed to suck it up and go. I even asked her if she was using pain as an excuse. I can’t tell you how many times that has happened and then a half hour later, I come upstairs to see my child spitting up blood. When that happens, I feel guilty as hell. I’ve treated her just like everyone else. I didn’t believe her. I even blamed her for not being able to go.
We need to stop blaming kids for their pain
Pain is real and in the case of my child, she has a number of conditions that cause her pain. While chronic pain does change the neurological system causing it to misfire (the basis of the APS diagnosis), the fact remains that what she is feeling physically is 110% real and it’s not her fault. Instead of adding to the burden by blaming everything on pain, doctors need to be more compassionate, responsive and listen. They need to treat her like she matters and not provide a “one treatment fits all” approach. Especially when she doesn’t neatly fit into the diagnosis box.
Children should never feel guilty or bad about the way that they feel. It’s hard enough to deal with pain and illness on a daily basis. It’s not their fault and they should not only be treated like they matter, they should get the same care as their adult counterparts. It’s not their fault.
If you have a child with chronic pain, the US Pain Foundation is looking for Pediatric Pain Warriors to help educate others about pediatric pain. We make a difference advocating for our children every single day. Have them reach out and make a difference in the life of others.
Crystal Seaton says
No words my friend. I wish I had an easy answer or solution.
debcb says
Me too. Wish it were that simple.
debcb recently posted…Blaming kids for their pain
Deania says
I too have kids with challenges. We address each instance individually just in case it’s Test-itis, didn’t do my homework or Spring fever. We are against throwing another pill at a kid after 16 years and 17 surgeries the Drs have put me through. I do not wish my life on my children. Instead, we encourage the kids to find ways to help themselves or ask us what might help. we have even made it a game of sorts to find the worst possible online diagnosis (you have cancer, you’re dying even when it’s a zit lol). What we rely on most with kids is honesty and inner strength. Find a way to feel better and if everything else fails, then it’s time for intervention.
In no way does it compare to Rosie! In fact, we use her story of strength and courage to teach the boys that life could be worse and to be thankful for the health they do have. As a whole, our family is trying to be healthier….together! Thanks for sharing your stories to make us appreciate what we have!
debcb says
You’re welcome. Thanks for sharing and for supporting us!
debcb recently posted…Blaming kids for their pain
Phyrra says
I’m so sorry for what she’s going through. It’s appalling for her to be blamed for not trying hard enough and told to push through.
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debcb says
I understand the theory behind the RAPS program (the treatment plan for kids with APS) and I do believe that it works because we have a friend that went through the program. We have more things going on then just pain and I need the doctors to listen so we can hopefully find and answer to the spitting up blood thing which is the most debilitating for Rosie right now.
debcb recently posted…Blaming kids for their pain
Carrie R says
Man, I can’t imagine what you all have endured through, Deb. I, for one, do get migraines though not nearly as frequently as Rosie (maybe 1-2 a month). And the lumbar puncture headaches are no joke. I had an epidural (twice- the first time he did it, he knicked a blood vessel) with my daughter, and the headache/migraine I experienced for a few days after was like nothing I had felt before. And since I was nursing my daughter, I couldn’t really take anything for it. But you are absolute right- the pain that adults feel and describe is always taken so much more seriously than children’s. It shouldn’t be that way.
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debcb says
Honestly, I can’t believe they let her go that long. It was awful.
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Cassie says
I’m so sorry she’s going through all of this. We need to stop blaming all pain patients for their pain. We need to stop pretending their fine and not hurting and just continue life as normal. I have chronic back pain and I have to push through it because I have 4 little kids who need me, but it pisses me off when people don’t understand that after a day of living through my pain, that I don’t want to do shit at the end of the day besides curl up on the couch. It also pisses me off that people expect a ton out of me when I’m doing the best that I can. It’s hard enough dealing with chronic pain as an adult, I can’t even imagine dealing with it as a kid. So much love and hugs to her!
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debcb says
Thanks Cassie. My hubby has horrible back and neck pain so I totally commiserate. It’s awful.
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Kelley says
I hate this for you, but glad you can be a voice to hopefully help other moms navigate similar situations!
debcb says
I hope so too. Every couple of weeks I have someone reach out to me and thank me. Keeps me sharing our story.
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