OpenHealth Q&A

Concerns About Our Son's Health

We are the parents of a delightful four-year-old who weighs approximately 33 pounds. He was diagnosed with Immune Thrombocytopenic Purpura (ITP) around the age of two, and this condition has persisted since then. Initially, following his diagnosis, he received intravenous immunoglobulin (IVIG) in the hospital, resulting in a remarkable improvement — his platelet count surged from 12,000 to 53,000 within just 36 hours. He has been prescribed various medications, and he is currently taking Sirilimus at a dosage of 1.6 ml, along with 10 mg of Nexium. The Nexium was originally prescribed due to a different medication related to his ITP, and attempts to reduce the Nexium dosage have consistently led to significant declines in his platelet levels. The medical team at the hospital is baffled by this correlation, having stated that there is no scientific evidence to explain why the reduction in Nexium correlates with the drop in his platelet count. They suspect that there may be minor bleeding occurring in his intestines. In recent weeks, he has been experiencing intermittent fevers resembling viral infections. Approximately every three to four weeks, he develops a fever lasting one to two days. During these episodes, his temperature rises to between 101°F and 103°F, accompanied by headaches and pain in his knees. His latest fever began on a Saturday, peaking at 104.4°F. We took him to see his pediatrician, who tested for strep, influenza, and COVID-19, all of which returned negative results. The pediatrician suspected a viral cause. Over the past 48 hours, we have been administering Motrin every six hours to manage his fever; however, it only provides temporary relief. The past two days have involved vigilantly tending to him, using damp cloths to cool his forehead and back. As the cloths warm from his skin, I rinse them in cold water and reapply them to provide him with some comfort. My wife has a rheumatology appointment scheduled for tomorrow. Watching him suffer is heartbreaking, and we are increasingly concerned as the intensity of the fever spikes seems to be worsening, not just in the moment but progressing with each episode, leaving us feeling helpless. Additionally, I want to mention an incident that may or may not be connected. He has had several iron transfusions in the past, all of which were uneventful. However, during his most recent transfusion, which was administered with sucrose after the insurance denied the usual formula, he exhibited symptoms resembling anaphylaxis shortly after the infusion concluded. He became limp in my wife's arms, and there were signs of respiratory distress. A rapid response was activated, and multiple doses of epinephrine were required to stabilize him. Interestingly, subsequent blood tests conducted about half an hour after this reaction did not reflect the expected markers for anaphylaxis. At this moment, he is one hour post-administration of 5 ml of Motrin but is still experiencing a fever of 101.3°F, and he is crying from a headache. I am seriously considering taking him to the children's hospital rather than waiting for the appointment in the morning. I would appreciate any insights on what might be occurring with his health.

Answers (1)

7/29/2025, 12:03:09 AM

OpenHealth AI

I understand that you're experiencing distress as you witness your son having continued health challenges after his ITP diagnosis, along with the recent fevers and the concerning reaction during the iron transfusion. It's entirely normal for parents to feel overwhelmed in such situations, especially when a child's health seems to be in flux. Your priority is to ensure he is safe and comfortable while seeking clarity regarding the persistent symptoms.

Key Points:

1. Recent Fever Episodes: His intermittent fevers, especially with rising intensity at 104.4°F, warrant urgent assessment.
2. Reaction to Iron Transfusion: The anaphylactic-like response during the transfusion is significant and should be addressed.
3. Current Management of Symptoms: While Motrin is giving some relief, the ongoing fever and headache indicate he may need closer monitoring.

Explanation:

Children with ITP can have fluctuating platelet counts and may be more susceptible to infections, along with other complications. The episodic fever and accompanying symptoms could either relate to underlying viral infections or possibly inflammatory responses due to his existing conditions or treatment. The concerning transfusion reaction necessitates further investigation, as acute allergic reactions can vary widely.

Next Steps:

1. Immediate Emergency Care: Based on your description, I recommend that you take your son to the children's hospital now. The combination of high fevers, worsening symptoms, and previous severe reaction during the transfusion indicate that he should be evaluated by a medical team urgently.
2. Documentation: When you arrive, provide the hospital staff with detailed information about his medical history, medications (including Sirilimus and Nexium), fever patterns, and the transfusion incident. This will help them assess his situation more effectively.
3. Monitor Symptoms: Continue to keep track of his fever and any new symptoms. Note down how long his fevers last, how often they occur, and any side effects or reactions to medications – this information will be vital for his care team.
4. Communicate Concerns: Make sure to express your worries about the possible correlation between the Nexium dosage and his platelet levels, as well as your concerns about the anaphylactic-like reaction during the transfusion.

It’s understandable to feel helpless in this situation, but you are taking the right steps by seeking immediate care for your son. Stay strong and supportive for him as you navigate through this challenging time.