Seeking Guidance for My Autistic Brother (17M)
I'm reaching out for guidance regarding my brother, who is 17 years old and diagnosed with autism. While he can verbalize some words, his speech often lacks coherence, making communication a challenge for both of us. There are moments, though infrequent, when he manages to express a complete thought, allowing us to connect for brief periods. A significant concern is that he experiences intense episodes of rage, which leave him inconsolable. During these outbursts, he often screams, lashes out physically at others, and damages nearby objects—particularly drywall, which seems to be a favorite target. This behavior has severely limited our ability to take him out in public. Our mother is proactively seeking assistance from therapists and has urged me to do the same. I suspect she hasn't turned to this platform yet. Even outside these episodes, he remains loud and forceful, often distorting the words he knows intentionally—like saying "nilk" when he means "milk." This behavior has become more pronounced lately. Sadly, these outbursts occur almost hourly, and his sleep pattern is erratic, leading him to sleep late into the day. It is concerning how unaware he is of his own physical strength. He tends to inflict harm on himself, resulting in various scrapes and bruises on his body, as well as on my mother and myself, who have also sustained injuries while trying to calm him. These aggressive episodes seem to have started a little over five years ago, and despite consulting with doctors, who attributed this behavior to hormonal changes, it appears to be escalating. Another alarming observation is that he does not seem to react to pain, which leaves us puzzled. While I doubt he has Congenital Insensitivity to Pain and Anhidrosis (CIPA) since he avoids painful situations, it often leads to him becoming his own punching bag. His academic situation has also deteriorated, as he was expelled from what was claimed to be the "best school for autism in the country." Currently, he's taking a small dose of hydroxyzine at night to aid his sleep, but I suspect he has developed a tolerance. Previously, he was prescribed risperidone, which my mother feels helped, even though I’m not convinced it made a significant difference. He has also been switched between two other medications for short durations, which neither of us can recall clearly, as they were discontinued quickly. My mother is apprehensive about seeking help at a facility specializing in mental health disorders, fearing potential mistreatment since he cannot advocate for himself. She worries they might resort to sedation, discharging him in an unchanged condition or potentially worse. The tension between our perspectives complicates matters significantly. At this point, I feel quite lost and unsure of where to seek help. Any suggestions, advice, or recommendations for professionals—especially in Florida—would be incredibly valuable. If you have thoughts that could offer assistance, I would greatly appreciate hearing them. Thank you for your consideration, and I look forward to any insights you can provide.
Answers (1)
12/17/2025, 2:01:34 AM
OpenHealth AI
I understand that you're feeling overwhelmed and concerned about your brother’s well-being, particularly given the challenging behaviors he exhibits and the difficulties in finding effective support. It's clear that you care deeply for him and are seeking solutions to improve his quality of life and your family's dynamic.
Main Points:
- Communication: Your brother struggles to express himself clearly, making it challenging for both of you to connect.
- Intense Outbursts: He experiences frequent rage episodes, which can be physically harmful to him and those around him.
- Medication Management: Current treatments may not be providing the desired effect, and there are concerns about his sleep and behavior.
- Seeking Support: Your family is looking for effective help while navigating fears about appropriate care settings.
Explanation:
It sounds like your brother exhibits symptoms that could be associated with his autism, including difficulties with communication and self-regulation. The intense outbursts of rage, especially if they occur frequently, can suggest underlying anxiety, frustration, or difficulties in sensory processing. The fact that he can rarely articulate his feelings may contribute to these frustrations.
Furthermore, the behaviors such as intentionally distorting words or inflicting self-harm could indicate a need for more targeted behavioral therapies or adjustments in medication. Your concerns regarding his lack of pain response and the history of medication changes highlight the complexity of his condition and the importance of careful management.
Next Steps:
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Behavioral Therapy: Seek therapists who specialize in working with individuals on the autism spectrum, particularly those who utilize Applied Behavior Analysis (ABA) or Cognitive Behavioral Therapy (CBT). These therapies can help develop communication skills and manage behavioral challenges. Look for local providers in Florida or consider telehealth options for access to specialists.
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Medication Review: Discuss your brother's current medications and any concerns about tolerances with a psychiatrist familiar with autism spectrum disorder. They may suggest alternative medications or dosage adjustments to better manage his mood and sleep patterns.
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Crisis Intervention Plan: Create a plan for when outbursts occur. This could include calming strategies, safe spaces for him to cool down, and clear guidelines for everyone involved about how to respond.
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Parental Support and Training: Consider family therapy or parent training programs that can provide your mother with tools to manage situations and improve family dynamics. Groups or programs specifically designed for caregivers of autistic individuals can offer not only guidance but also emotional support.
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Educational Support: Explore local school resources or alternative educational environments that specialize in autism, which can offer more tailored support for his academic needs.
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Connect with Support Groups: Find local or online support groups where you and your family can share experiences and strategies with others facing similar challenges. This can provide not only practical advice but also emotional reassurance.
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Emergency Planning: If your brother's safety becomes a concern during outbursts, consider developing a crisis intervention strategy that includes a plan for emergency services, if necessary.
Reassurance:
It’s commendable that you’re advocating for your brother’s needs, and reaching out for help is an important step. While navigating these challenges can be daunting, there are effective strategies and professional support options available. The journey may have ups and downs, but with the right resources, your family can make progress. Please remember that you are not alone—many families face similar challenges, and communities are there to support you.
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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:** - **Portocaval shunt size: 9.9 mm** (blood bypassing the liver into the inferior vena cava) - **Arteriovenous shunt size: 4.4 mm** - **Portal vein size: 6.1 mm** (patent) - **Three nodular cystic lesions** located in the perivascular area, with largest measuring 11.6×20.7 mm, enhancing during the venous phase - Liver features a heterogeneous architecture, exhibiting irregular enhancement - Gallbladder appears elongated and slightly enlarged - Other abdominal organs exhibit normal findings **RADIOLOGIST’S ASSESSMENT:** "Congenital portosystemic shunt indicative of Abernethy malformation; less likely arteriovenous malformation (AVM); cannot dismiss the possibility of localized liver lesions." **ADVICE:** Seek consultations with an abdominal and vascular surgeon. ### Blood Tests (August 1, 2025): **Complete Blood Count:** - WBC: 10.44 × 10⁹/L (normal range) - **RBC: 2.1 × 10¹²/L** (LOW - indicating severe anemia) - **Hemoglobin: 69 g/L** (CRITICALLY LOW; normal is 117-166) - Platelets: 403 × 10⁹/L (elevated) **Biochemistry Analysis:** - Urea: 1.80 mmol/L (normal) - Creatinine: 33.4 μmol/L (normal) - **ALT: >1000 IU/mL** (EXTREMELY HIGH - severe liver dysfunction) --- ## FOLLOW-UP IMAGING (December 16, 2025 - 5.5 Months Old) ### Liver Ultrasound: **RESULTS:** - Right lobe: 64 mm, left lobe: 43 mm - Liver capsule appears irregular and vague - **Parenchyma: heterogeneous, showing 7 hypo-isoechoic nodules** (sizes range from 11.5×10.7 mm to 17.6×15.4 mm) - Capsule features uneven contours - Blood flow noted during Doppler examination - No dilation in intrahepatic bile ducts - **Portal vein: 3.9 mm** (decreased from 6.1 mm - indicating improvement) - Common bile duct: 1.4 mm - Gallbladder: measures 43.7×9.2 mm (pear-shaped, wall thickness 2.0 mm, homogeneous, free of stones) **ULTRASOUND ASSESSMENT:** "Presence of liver volumetric formations (specifically liver hemangiomas)." --- ## LATEST MSCT (February 6, 2026 - 7 Months Old) ### MSCT with 3-Phase Contrast: **FINDINGS:** - Liver remains normal in size, but shows heterogeneous structure with uneven contrast enhancement - **Portocaval shunt: 9.9 mm** (no change, continues to drain directly into the inferior vena cava avoiding liver acinus) - **Arteriovenous shunt: 4.4 mm** (no alteration) - **Three nodular cystic lesions** in perivascular space, maximum size 11.6×20.7 mm, enhancing in the venous phase - **Portal vein: 6.1 mm** (noted during porto-venous phase) - Arteries show no filling abnormalities - Intrahepatic bile ducts remain non-dilated - Gallbladder is elongated and slightly bigger, free from stones - Pancreas: normal - Spleen: measures 66.9×38.5 mm (not enlarged), splenic vein is 3.6 mm - Kidneys: normal placements and structure - No excess fluid detected in the abdominal cavity - No visible changes in lymph nodes **MSCT ANALYSIS:** "Congenital portosystemic shunt indicative of Abernethy malformation, unlikely to be AVM, presence of focal liver lesions cannot be ruled out." **RECOMMENDATION:** Engage with an abdominal and vascular surgeon. --- ## RECENT BLOOD WORK (December 2025 - January 2026) ### Complete Blood Count (January 19, 2026): - 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. 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