Seeking Answers for My Daughter's Medical Condition
I'm reaching out in hopes of finding guidance regarding my 14-year-old daughter, who stands 4'11" and weighs 98 pounds. She has never smoked. A few weeks ago, she started experiencing numbness and swelling on the right side of her face, accompanied by considerable pain. This unsettling situation escalated to include her right arm and leg, eventually affecting the entire right side of her body. Though she didn't experience paralysis, she exhibited weakness, particularly when her right leg gave way as she attempted to ascend the stairs. This concerning episode led us to the emergency department. During her visit, she underwent several tests, including a complete blood count (CBC), a white blood cell (WBC) assessment, as well as a CT scan and MRI of her brain—all results came back normal. Consequently, we were discharged with instructions to arrange a follow-up appointment. However, after a symptom-free day following that appointment, she was hit with the symptoms anew, exhibiting an acute onset even at rest. As a result, she was referred to physical therapy and scheduled for an MRI of her entire spine. Delving into her medical history, it's notable that she has been battling shoulder and neck pain for years since sustaining a concussion at around age 10. This injury occurred when she fell off a scooter while careening downhill without a helmet, hitting the left side of her head near the temple. Although CT scans at the time indicated no bleeding, she presented with memory loss concerning the event and persistent vomiting that resisted treatment, even with intravenous fluids and medications. After the concussion, her demeanor changed drastically; she seemed out of sorts for an entire year before returning to her baseline. Despite my concerns, her pediatrician did not pursue further evaluations. The spinal MRI results showed a bulging disc at C5-6, but thankfully, there was no compression of the spinal cord. My daughter is an accomplished violinist and ballet dancer, yet she is unable to engage in any physical activities without igniting her symptoms. It has now been weeks since our visit to the emergency department, and the symptoms continue to emerge sporadically, yet with reduced duration—usually lasting only a couple of hours. She’s gradually increasing her activity levels but has entirely ceased ballet, as the pain in her neck and shoulders becomes exacerbated during practice. She was sent to a neurosurgeon who determined surgery wasn’t necessary, and a neurologist suggested it was not a neurological issue—though they refused to see her—and pointed to an orthopedic concern instead. The orthopedic doctor, specializing in sports medicine and shoulder ailments, evaluated her longstanding issues, which included pain and popping sensations, as well as numbness extending to her arm and fingers. He asserted that shoulder problems typically do not cause nerve pain radiating down the arm or affecting the legs and face. Having been referred again to physical therapy and to another orthopedic specialist focusing on the spine, my frustration mounts. Today, she contacted me from the school nurse’s office, reporting renewed numbness and pain in her left leg, causing her distress. Moments later, she texted to inform me that both legs were now afflicted with numbness, weakness, and pain. This academic year, she has been missing significant amounts of school and, as a straight-A student, is disheartened by the prospect of falling behind. She prefers to stay in class, despite her discomfort, fearing the consequences of skipping school. We're in dire need of assistance! We have Kaiser HMO insurance and feel dismayed that they are not doing enough to uncover the core issue, as our daughter seems to be continuously shuffled from one specialist to another without resolution. I'm coming here in the hope that others may have faced similar experiences or can suggest specific avenues for further investigation or tests that could provide clarity. As her parents, we are deeply pained to see her suffer like this, and I truly plead for any support or advice.
Answers (1)
4/4/2025, 6:01:32 PM
OpenHealth AI
I'm really sorry to hear about your daughter's ongoing struggles with these distressing symptoms. It's clear that you're feeling overwhelmed, and it's understandable to seek clarity and assistance for her condition.
Main Points
Your daughter is experiencing troubling symptoms including numbness and pain, primarily affecting the right side of her body but now affecting both legs. Despite normal imaging results, her condition is impacting her daily life and school. It's essential to monitor her symptoms closely and explore further testing and supportive care.
Explanation
The symptoms you've described—numbness, weakness, and pain—while distressing, can arise from various causes, including musculoskeletal issues, nerve compression, or even residual effects from her previous concussion. The presence of a bulging disc at the C5-6 level suggests that there may be some cervical spine involvement, which could potentially explain some symptoms, especially if there is irritation of nearby nerves.
However, given that the imaging has returned normal results and specialists are exploring orthopedic issues, it does suggest that the situation might not be entirely straightforward. It would be beneficial to consider both physical and neurological assessments comprehensively. Furthermore, with her history of concussion and persistent issues, it's essential to keep that in mind as a potential underlying factor.
Next Steps
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Symptom Diary: Start keeping a detailed diary of her symptoms, noting when they occur, their duration, intensity, and any activities she was doing prior. This can help identify potential triggers and patterns that will be valuable for her healthcare team.
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Stay Engaged with Care Providers: Continue advocating for your daughter. If you feel that a particular specialist isn’t addressing her concerns adequately, don’t hesitate to push for a second opinion or request referrals to more specialized centers that might have expertise in headache and concussion management or complex musculoskeletal issues.
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Consider a Multidisciplinary Approach: Look for comprehensive headache or pain management clinics that might combine physical therapy, occupational therapy, and neurologic support, facilitating a more holistic view of her care.
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Physical Therapy Focus: Ensure her physical therapy is tailored specifically for her condition, focusing not only on her neck and shoulder but including exercises and modalities that can help with strength and stability in her legs as well. You might ask for a detailed physical assessment to ensure that therapy aligns appropriately with her symptoms.
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School Support: Engage with her school to create a plan that accommodates her academic needs. For example, they may offer tutoring or adjustments to her workload while she recovers. Communication with the school nurse about her symptoms can help structure support.
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Regular Follow-up Appointments: Schedule follow-ups with both neurology and orthopedics, maintaining regular checks on her progress and adapting the treatment plan as new symptoms arise or if her condition changes.
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Emotional Support: Consider counseling or support groups for her and for you as parents, as managing chronic conditions can take a toll emotionally. A mental health professional trained in dealing with chronic illness can provide coping strategies.
Your daughter's health journey can be frustrating and uncertain, but staying persistent while ensuring she feels supported emotionally and academically could make a positive difference in her recovery. Please feel free to reach out should you have further questions or need assistance with navigating this process.
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