Update on My 13-Year-Old Daughter's Health
A few weeks ago, I shared a post expressing my concerns about my 13-year-old daughter after her pediatrician dismissed her symptoms. Recently, I took her to a larger hospital where we consulted a different pediatrician who conducted a much more comprehensive evaluation of her health. Initially, the lab tests indicated the possibility of hypothyroidism. However, after reviewing all the lab results and noting a new rash that appears on her face every afternoon, she has been diagnosed with Systemic Lupus Erythematosus. She will be under the care of a pediatric rheumatologist and will start medication to manage her symptoms, along with additional tests to assess her kidney function. I truly appreciate all the support I've received. There's a significant relief knowing she is on the path to recovery. If anyone has tips or advice for managing lupus in teenagers, or general information about the condition, I would be incredibly grateful. Thank you all for your kindness and support. Just to provide some context: She’s 13 years old, 5’3” tall, and weighs 100 pounds.
Answers (1)
4/2/2025, 1:10:39 PM
OpenHealth AI
It's great to hear that your daughter is receiving a more thorough evaluation and diagnosis. Systemic Lupus Erythematosus (SLE) can be challenging to manage, but there are effective strategies to help support her health and well-being.
Understanding Lupus: Lupus is an autoimmune disease where the body's immune system attacks its own tissues, which can lead to inflammation and damage in various parts of the body. Common symptoms include rashes, joint pain, fatigue, and issues related to organs, such as the kidneys. It’s encouraging that she is already under the care of a pediatric rheumatologist, as they can provide specialized care and tailor treatment to her needs.
Prioritized Next Steps:
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Medication Adherence: Ensure that she follows her prescribed medication regimen. It’s vital for managing symptoms and preventing flare-ups. Talk to her doctor about any side effects or concerns.
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Regular Monitoring: Keep scheduled appointments with her rheumatologist. Frequent check-ups are crucial to monitor her response to treatment and any potential effects on her organs, especially the kidneys.
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Sun Protection: Since lupus symptoms can flare up with sun exposure, encourage her to use sunscreen (SPF 30 or higher) and protective clothing when outdoors. Avoid direct sunlight, especially during peak hours.
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Healthy Lifestyle: Promote a balanced diet rich in fruits, vegetables, whole grains, and lean proteins. Adequate hydration and regular, moderate exercise tailored to her capabilities can boost her overall health and potentially help reduce fatigue and stiffness.
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Stress Management: Engage her in activities that promote relaxation and mental well-being, such as yoga, mindfulness, or hobbies she enjoys. Stress can trigger lupus symptoms, so finding effective coping mechanisms is essential.
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Symptom Journal: Consider keeping a journal to track her symptoms, triggers, and any medications taken. This can help identify patterns and provide valuable information to her healthcare team.
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Support System: Encourage open communication with her. The emotional toll of chronic illness can be significant, and ensuring she has emotional support from family, friends, or a mental health professional is crucial.
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Educational Advocacy: Educate yourself and your daughter about lupus. Understanding her condition can empower both of you and help in managing her health more effectively.
You are doing a fantastic job advocating for her health, and I'm here to support you with any more specific questions you might have regarding her care or managing lupus. Keep the lines of communication open, and don't hesitate to reach out for assistance when needed.
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# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - 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WBC: 5.8 × 10⁹/L (SHOWS IMPROVEMENT) - **RBC: 2.93 × 10¹²/L** (IMPROVED but still low) - **Hemoglobin: 72 g/L** (SHOWS IMPROVEMENT but still low) - Platelets: 223 × 10⁹/L (BACK TO NORMAL) - Neutrophils: 30.0% - Lymphocytes: 64.8% - Monocytes: 4.6% ### Biochemistry (January 28, 2026): - Total protein level: 67 g/L (slightly deficient) - Creatinine: 20.7 μmol/L - **Total Bilirubin: 242 μmol/L** (STILL HIGH - unchanged) - **Direct Bilirubin: 142 μmol/L** (VERY HIGH) - **ALT: 50 IU/mL** (DRASTICALLY LOWER from >1000!) --- ## OVERVIEW OF PROGRESS OVER 6 MONTHS | Parameter | August 2025 | January 2026 | Change | |------------------|-------------|---------------|--------------------------| | **Hemoglobin** | 69 g/L | 72 g/L | ↗ Slight improvement | | **RBC** | 2.1 | 2.93 | ↗ Improved | | **ALT** | >1000 | 50 | ✓✓ MAJOR IMPROVEMENT | | **Bilirubin** | 245 | 242 | → Unchanged (still elevated) | | **Portal vein** | 6.1 mm | 3.9 mm (US) | ↗ Decreased | | **Platelets** | 403 | 223 | ↘ Normalized | | **Shunt size** | 9.9 mm | 9.9 mm | → No Change | --- ## CURRENT SITUATION (February 2026 - 7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - Cons: Surgical scar, longer recovery time (7-14 days in hospital) - Duration: 2-4 hours ### Option 3: **Liver Transplantation** - We have been advised this is not necessary as the portal vein is functional and liver health is improving. --- ## SPECIFIC QUESTIONS TO CONSIDER: 1. **With a functional portal vein (6.1 mm) and improving liver function (ALT normalized), is it advisable to pursue endovascular closure as the preferred treatment?** 2. **Despite ALT levels improving, the bilirubin remains consistently high (242). Should this be a cause for concern? Is there a prospect for it to normalize post shunt closure?** 3. **Are the hemangiomas/nodules (11.6×20.7 mm) linked to the shunt? Will they likely resolve following shunt repair?** 4. **How urgent is the proposed intervention? Is immediate action required, or is there flexibility to wait a few months?** 5. **What complications should we be vigilant for during the waiting period?** 6. **Regarding endovascular closure - what is the average success rate for infants aged 7 months? Are there concerns regarding the shunt size (9.9 mm)?** 7. **The measurement of the portal vein has shown improvement from 6.1 mm to 3.9 mm; should this be perceived as a positive sign or a reason for concern?** 8. **Are there special directives (diet modifications, medications) we should consider while awaiting the procedure?** 9. **Post-procedure, how long should we expect it might take for:** - Normalization of bilirubin levels? - Return of stool color to normal? - Resolution of jaundice? - Regression of hemangiomas? 10. **Can you recommend any specialized centers for pediatric Abernethy malformation treatments? We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. Seeking expert advice on optimal treatment strategy and timing.