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New to Forum - Mother of 10 Year old with Arthritis

My son has arthritis, diagnosed last summer. Specifically, he has Enthesitis Related Arthritis and Hypermobility. He is being treated at a reputable children's hospital. He gets PT and OT weekly. He also recently started getting massages, too.

He is a fantastic kid, funny, wicked smart, sweet, kind. He swims twice per week. He shows dogs. He plays the ukulele, tenor and baritone, though he had to stop playing mandolin because it was too hard on his hands. Getting past the it just isn't fair part of the conversation, I came to the list looking for a sounding board for parenting decisions.

I have two children, my second, my daughter, is healthy with no more than the normal cold or flu. Parenting a child with chronic pain is taxing. We are instructed to keep him active and fit, but when is it too much? It is almost impossible to know when to push and when to back off and let him rest.

Thanks in advance.

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Comments

  • LizLiz Posts: 8,221

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • mjd210mmjd210 Posts: 92
    edited 03/21/2014 - 9:47 AM
    Hello I just sent you a private message.
    alif l4-s1
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  • how much is too much........staying physically active and engaged is great , and kids, thankfully are usually far more resilient than we are , as adults.
    Is he also on anti inflammatory medications for the arthritis? It might also be a good idea to discuss your concerns regarding activity with both his therapists, and his doctors .
  • You want to wrap him in bubble wrap and just protect him. We work closely with his pediatric rheumatologist. She has said that when he is mad at us now for pushing him, he will thanks us when he is older. I thin it's the emotional
    Toll that is the hardest for all of us. Little kids shouldn't have pain. *sigh*. He is on meloxicam. Because he has IBS also we have a limited selection of meds from which to choose.
  • it's hard enough to deal with adult pain but when it is our children, we would do anything to take it on ourselves.
    Emotionally you do want to wrap them in bubble wrap and insulate them from any harm, but we can't.......I found that out the hard way, having four of my own....two now young adults and two still teens
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  • Are there any online child specific support groups or boards? Our children's hospital has groups for juvenile diabetes, cancer, mental health, autism, but nothing for chronic pain. Very frustrating.
  • I am sending you a private message........
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