At What Point Should My Son Stop Pushing Through His Pain?

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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My 16-year-old son, Caeleb, is on summer break. He told me that summer is a little too boring and the school year is a little too much. He is definitely a teenager. Next month he begins summer band, and boredom will become exhaustion.

Caeleb is already concerned about marching band season. He plays the synthesizer in the percussion pit on the field’s sidelines. I asked him why he was so concerned, especially since he won’t be physically marching. Caeleb acknowledged that he is afraid of what might happen regarding his arm pain, a result of living with hemophilia.

When I told him he could opt out of marching band, my son replied, “But Mom, my part is important. They depend on me.” Yes, indeed, my son. I know his heart is fully dedicated to his band program, but I worry that his fear will keep him from completely experiencing the wonder of band.

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Museum Day Brings a Grim Reminder of My Son’s Pain

Caeleb has a couple of upcoming doctor appointments, and I hope he gets some answers for his recurring arm pain. But I’m afraid there won’t be any.

How do I help my son? I’ve been pushing him to keep moving despite his pain. I know from my health struggles that pushing through is painful but necessary. But where is the line? How do I know when to stop pushing?

Years ago, Caeleb went ice skating with his dad. He tumbled on the ice and braced his fall with his hands. After coming home, he kept complaining about his wrist hurting. A few hours of crying and Tylenol meant that something was not right. My husband and I were trying to help him get through his injury. We soon found out his wrist was broken.

Not realizing he had a broken bone is one of my worst parenting moments. I wanted him to push through and for all to be well. I know many parents have similar stories. A sore throat turns out to be strep. A fever turns into pneumonia. The list goes on.

I never wanted my sons to be perceived as fragile or weak because of their hemophilia. Unfortunately, there have been too many instances, especially when my boys were toddlers, when people treated them with kid gloves. All I wanted was for my boys to be seen for their identity and not their diagnosis.

Of my two sons, Caeleb has had more challenges with hemophilia and an inhibitor. Perhaps I have been too protective at times. I know this is true, especially when he needed a wheelchair for over a year. I’ve been pushy as he’s gotten older. Fortunately, a new treatment has improved his quality of life, and doing the things that made him happier came more easily.

I am watching my son grow up into a caring and compassionate young man. I only have a couple more years where being pushy is allowed. For now, I’ll keep pushing, not just for Caeleb to keep moving, but for the doctors to help us get some answers and relief.

That’s what hemo moms do.


Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

Comments

Donald Shinn avatar

Donald Shinn

To begin with, you need to know the cause of the pain. If it's advanced hemophilic arthropathy, there is no pushing through the pain. The more you use the joint the more painful it'll become. It's not like a "normal" arthritis where continued use can be beneficial. The joint surfaces can become eroded and the more you use them, the more inflamed and angrier they'll get. Imagine skinning your knee, then instead of giving it time to heal you take rough sandpaper to it on a regular basis. Would it make it feel better? No. That's what happens inside the joint of a hemophiliac with advanced hemophilic arthropathy.

For me, the only answer for my ankles is to ease off on using them. As I've been told for most of my life "It's something you have to learn to live with." I plan ahead and ease off on my ankles before I know I'll need them for a day and then take a day off afterward to let them calm back down.

If it is hemophilic arthropathy that's the cause of his pain, easing off on using his arms before a planned event should keep the pain manageable for the event. He may have to rest his arms a bit afterward to let things calm back down also. More use and pushing through the pain isn't always the best answer. You need to know the cause of the pain. Trying to push through an inflammation that gets worse with use just makes the inflammation worse and increases the pain.

See what his docs say, and what the exams show then go from there. He'll learn to manage his arm pain over time and adjust his life to keep the pain manageable.

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Cazandra Campos-MacDonald avatar

Cazandra Campos-MacDonald

Hi Donald,
Thank you for your comments. My son does have hemophilic arthropathy in his knee and ankle, it's the arm that we are trying to figure out. Just this week we were at yet another appointment with another doctor not having any idea to what is causing his pain. We are waiting for a call to schedule another MRI that will hopefully give some more information. I think the hardest thing to do with a teenager is help them understand that they must keep moving while caring for their damaged joints. I am proud of him for being aware of what causes his arm pain to get worse and he is doing a good job at managing it. I just worry about how he will manage when school starts. Pain gets in the way of everything and I want to help him manage it the best I can. All my best to you, Donald :)

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