Seeking Insight on Potential PANDAS/PANS for My 5-Year-Old Son
Hello everyone, I am currently evaluating a possible case of PANS/PANDAS in my otherwise healthy 5-year-old son. He is of average height and weight, we belong to the Caucasian demographic, and besides a dairy allergy, he has had no significant health or behavioral concerns. Below is a timeline of events: - **January:** My wife fell ill with a severe sore throat, which my son subsequently contracted. He was put on amoxicillin on January 31 due to an ear infection. - **February 9:** He finished the amoxicillin course. - **February 11:** Shortly after, my son began experiencing vocal and throat-clearing tics, which progressively intensified throughout the month. This was completely new behavior for him. Simultaneously, his emotional reactions escalated significantly over the coming weeks, marked by intense rage, physical aggression, heightened clinginess, loud crying, and several incidents of bedwetting. - **February 27:** He started a course of Cephalexin along with a dexamethasone dose for croup. Following this treatment, his behavior stabilized, and the frequency of tics decreased by approximately two-thirds. - **March 7:** He completed the Cephalexin treatment, but emotional instability and tics resurfaced by March 8 and 9. - **March 11:** A 9-day taper of Prednisone was initiated alongside a 14-day course of Cephalexin and various blood tests, including: * ESR * CRP * Complete blood count (CBC) with differential * ASO * Anti-Dnase B Streptococcus antibodies A test for strep throat returned negative. Remarkably, his behavior improved significantly the day after beginning treatment, and by March 19-20, his tics had almost entirely vanished during daylight hours, with only minor occurrences at night while reading, which appears to be a major trigger. This indicated around a 95-98% reduction in tics. - **March 15:** We received his blood test results, which showed no strep antibodies but noted a low white blood cell count. - **March 21:** Following the complete taper off of Prednisone, the tics reappeared, and starting March 23, his emotional issues were once again exacerbated. Looking ahead, I'm considering Azithromycin or Augmentin as potential next steps. Based on what I've researched, I am also interested in pursuing further blood tests that would include the following: 1. **Infectious Triggers (1 vial – SST/Gold Top):** * EBV Panel (VCA IgM, IgG, EBNA IgG) * CMV IgM/IgG * Parvovirus B19 IgM/IgG * Mycoplasma Pneumoniae IgM/IgG or PCR * Herpes Simplex Virus (HSV) IgM/IgG *(These tests target potential infection triggers, especially important given his low white blood cell count.)* 2. **Autoimmune & Inflammation Markers (1 vial – SST/Gold Top):** * Anti-Dopamine Receptor (D1, D2) & Anti-Lysoganglioside Antibodies *(Specific to PANS/PANDAS—critical for identifying autoimmune responses.)* 3. **Thyroid & Immune Function (1 vial – SST/Gold Top):** * TSH, Free T3, Free T4, TPO & TG Antibodies * Serum Immunoglobulin Panel (IgA, IgG, IgM, IgE) *(These tests rule out thyroid issues and assess immune system strengths.)* 4. **Optional Blood Test (if agreeable – Inflammatory Markers, EDTA/Purple Top):** * Cytokine Panel (IL-6, IL-10, TNF-α, IFN-γ) *(This would provide insights into overall inflammation and could potentially be conducted later.)* I would appreciate any feedback or thoughts on this! Thanks for reading!
Answers (1)
3/25/2025, 8:31:01 PM
OpenHealth AI
It's understandable to be concerned about your son's sudden changes in behavior and the possibility of PANDAS/PANS. These conditions can arise after infections, causing a range of symptoms like tics or emotional instability. Based on your description, there are beneficial steps you can take to further evaluate his condition and support his recovery.
Main Points
- Evaluate Potential Triggers: Tics and emotional changes can correlate with infections, so it's crucial to continue investigating possible infectious or autoimmune triggers.
- Prioritize Supportive Care: Focus on maintaining a stable environment, addressing emotional needs, and managing tics as they arise.
Explanation
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) can be complex. Your son's timeline shows a notable connection between episodes of illness and changes in behavior. It’s important to continue to look into potential triggers, both infectious and autoimmune, which you are already considering with follow-up blood tests.
His past treatments appear to have been effective but managing symptoms and identifying underlying causes should be fundamental to your approach going forward. The range of blood tests adds valuable insights into potential infections and autoimmune responses, especially given the previous normal results for streptococcal antibodies.
Next Steps
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Continue Blood Tests: Follow through with the proposed tests to evaluate for infections, autoimmune markers, thyroid function, and inflammatory markers. This will provide a clearer picture of his condition.
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Monitor Symptoms: Keep a detailed diary of his symptoms and behavior changes. Note when tics appear, any triggers you observe (like reading), and emotional responses. This data can be helpful for healthcare providers in determining the next steps.
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Supportive Interventions:
- Create a Safe Environment: Ensure he has a predictable routine and calming activities to help manage emotional distress.
- Teach Coping Strategies: Help him develop ways to express his feelings, which can be especially important during episodes of emotional upheaval.
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Nutritional Considerations: Since he has a dairy allergy, it may be worthwhile to also ensure his diet is well-rounded to support his immune system. Consult with a pediatric nutritionist if you need guidance in this area.
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Evaluate Future Treatments: Discuss with his healthcare team the potential of Azithromycin or Augmentin based on your findings. If needed, consider a multi-disciplinary approach that includes pediatric specialists who are familiar with PANDAS/PANS.
Reassurance
Navigating this situation can feel overwhelming, but you are taking the right steps by being observant and proactive. Keeping communication open with healthcare providers and advocating for thorough investigations will help guide you toward the best options for your son. Remember, you are not alone in this journey, and support networks are available as you seek answers. If you have any further questions or need clarification as you move forward, feel free to ask.
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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.