Some of my experiences dealing with two adolescent children requiring resections, therapy, and learning to adjust to living with TOS. Previous posts on this topic... here.
*When your child is in excruciating pain and nothing seems to help, it is just a nightmare. Some kids seem to be better at self soothing and need to be undisturbed when they are dealing with pain. Other kids want physical touch, hugs, a back rub to feel comforted. Listen to what your child needs in times of acute pain. Sometimes distraction is all you can offer- tv, music, talking on phone, having a friend over, play a game.
*Obviously, you need to be your child's advocate. Learn all you can about your child's pain condition. Get your child the help they need, knock down whatever obstacles you have to in order to get your child appropriate relief. You, as the parent, must stick up for your child and push for answers. I know what it is like to live with your child in pain, and nothing is helping. To see your child cry, pace the floor, withdraw from their friends and from being a kid...it's gut wrenching.
Please see this post for an update about my daughters condition, and the fact that the first rib she had surgically removed...grew back!! Ask surgeon about this possibility if you are considering surgery for your child.
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I'll never forget years ago, when we first heard the medical term 'thoracic outlet syndrome' in a doctor visit with a surgeon for our 14 year old son. We went home and looked up online anything we could find to understand better what we were dealing with. The few images and medical reports available back then made us nauseas and frightened for our sons future. But we pressed on and kept digging until we found some help for him. A year later when our daughter started having arm pain and the x-rays showed cervical ribs, my stomach churned again because I knew she was facing the same compression causing her pain as her brother had. Lots of tears, prayers, and sleepless nights for sure.
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*Keep a Pain Journal of your child's pain. I nagged my kids to write down every time they had pain, give it a number, what they were doing when the pain started, what made it go away. This is very helpful to take to doctor appointments.
*Make a plan for your child's school year. Talk with teachers about your child's chronic pain.
Be sure the school has the necessary forms filled out on file to administer pain medications.
Get doctor notes regarding your child's participation in Physical Education.
Talk to your child and know what challenges they are facing at school with their pain issues.
My daughter, for example, who was 13 with TOS arm pain symptoms, was initially told by her P.E. teacher she had to run laps like everyone else. I had to get a doctors note explaining her situation for her to be excused from activities causing her pain, and even then she was told to walk the laps and continued to have arm pain. We eventually decided to home school in-part due to a lack of cooperation on the school's part. I never thought I could home school, but there are SO many great resources available, online, correspondence, etc.
*Pay attention to how your child sleeps. Stomach sleeping is a big trigger for TOS issues, as is having an arm raised overhead. Extra pillows to prop while sleeping, safety pin arm at the elbow to side of pajamas to keep it from being overhead.
*More about kids and TOS coming soon! Feel free to contact me by using contact form-side column.