Concern for 12-Year-Old with Blood in Saliva and Persistent Headache
Greetings. I hope I don’t come off as an overly anxious parent, but we’re at a loss here. My daughter, who is 12, has a medical history that includes migraines, hypermobile Ehlers-Danlos syndrome (hEDS), fibromyalgia, and hypertension, which has been controlled since birth. She experiences various symptoms associated with these conditions. Her headache began on Sunday afternoon, accompanied by joint discomfort that's more severe than her usual aches, although that’s not uncommon for her. Typically, she uses rizatriptan to alleviate her migraines; however, she quickly reached the maximum dosage by Monday. This particular headache isn't typical of her usual migraines. To provide relief, we've been administering naproxen and Tylenol, but these measures haven’t been very effective. By Tuesday evening, she reported some neck pain, and we observed swelling on the right side. She expressed discomfort when moving her head or when the area was touched. A few weeks ago, her rheumatologist identified a small swollen lymph node in that area and suggested monitoring it, recommending we inform her PCP, who might refer her to an ENT specialist. Last night (Wednesday), she needed tissue to spit something out, which turned out to be bright red blood. Given her history of nosebleeds, I first examined her nose, finding no signs of bleeding. However, over the next few minutes, she continued to spit blood without any associated coughing or vomiting. We rushed to the pediatric emergency department (ED) where the medical team shared my confusion. Her red blood cell count and hematocrit levels were slightly low but not alarming, and her clotting factors as well as platelet counts were normal. No source of bleeding was identified, and the headache did not improve with the migraine treatment administered. A chest X-ray came back clear, with suggestions that her esophagus might be irritated. After returning home from the ED, she woke up again expelling blood, and it appeared in small clots. She also mentioned her headache had intensified. This morning, the bleeding continued, and the Tylenol proved ineffective against the pain of her headache. Now I find myself back at the ED, where her headache persists and she continues to spit blood. Thankfully, the quantity isn’t excessive, yet the doctors remain unable to determine the origin of the bleeding. They noted that her sinuses could be the culprit, or possibly some bleeding deep in her nasal cavity. She clarified that she can feel the blood coming up, not flowing down. Alarmingly, the physicians admitted they are uncertain about the cause and don’t believe it is a migraine. They also confirmed the visible swelling in her neck. Now, they are contemplating sending us home and advised starting consultations with ENT or GI specialists. My daughter is understandably frightened due to the ongoing blood spitting, which leaves me concerned and unsure of the next steps. The chest X-ray performed here was also clear. I feel at a loss for what to do next or which questions to pose. The earliest appointment with her ENT is scheduled for 9/22, and I am awaiting a response from her GI specialist. Has anyone experienced anything like this before? Is there something I might be overlooking? I apologize if I sound overly worried.
Answers (1)
9/11/2025, 6:30:59 PM
OpenHealth AI
I'm here to help address your concerns about your daughter and provide clarity on the situation. It's completely understandable to feel anxious given the symptoms she has experienced.
Main Points:
- Your daughter's combination of symptoms—persistent headache, neck swelling, and blood in saliva—warrants careful monitoring and follow-up.
- Since the emergency department (ED) evaluations did not find a clear source for the bleeding, coordinating with her specialists (ENT and GI) is essential.
Explanation:
Given your daughter's medical history of migraines, joint discomfort, and the recent symptoms, it seems there is a multifaceted issue at play. The presence of bright red blood when she spits could originate from the upper respiratory tract, possibly linked to her sinuses, throat, or even her esophagus, especially if there's irritation. The swelling in her neck might indicate lymph node involvement, and in the context of her EDS and fibromyalgia, it can complicate findings.
Because her recent headache does not respond to your typical treatment with rizatriptan and has intensified, it suggests that this may not be a typical migraine but an issue requiring specialized evaluation.
Next Steps:
- Continue Monitoring: Keep a detailed log of her symptoms. Note when the blood appears, any triggers, pain levels, and the symptoms associated with her headaches. This diary can be invaluable for her specialists.
- Hydration and Rest: Make sure she stays well-hydrated and gets plenty of rest while her symptoms are ongoing. If she experiences worsening headaches or blood spitting, it can contribute to fatigue and worsening condition.
- Manage Pain: Since Tylenol and naproxen are not providing relief, in consultation with her doctors, explore alternatives for headache management. It may be necessary to consider medications that target inflammation specifically, as advised by her physician.
- Consult with Specialists: Given the need for ENT and GI assessments, stress the urgency of her symptoms when speaking to the offices to potentially secure earlier appointments. Explain that the pain, swelling, and bleeding raise concerns that necessitate prompt evaluation.
- Emergency Care Decision: If your daughter continues to expel blood or if her headaches worsen, do not hesitate to return to the ED. Although they are contemplating discharging you, persistent symptoms warrant further evaluation.
Questions to Ask Her Specialists:
- What testing or imaging might be necessary to determine the source of the bleeding?
- Are there specific signs to watch for that would require immediate medical attention?
- What treatments can be initiated to address the headaches and manage pain or irritation pending diagnostics?
Your efforts to seek answers are essential, and I encourage you to trust your instincts as a parent. It’s clear you care deeply for your daughter’s health, and taking these next steps can help ensure she receives the care she deserves.
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