Struggling with Persistent Vomiting for Over a Year
For more than a year now, I've been grappling with severe vomiting that prevents me from retaining any food unless I receive intravenous Zofran or an injection of it. Initially, after each meal, I would endure relentless nausea for a duration of 8 to 12 hours, leading to repeated bouts of vomiting with little respite in between. Fortunately, in the past couple of months, I've occasionally managed to sleep before the retching begins, as my body empties all contents. I've experimented with numerous dietary approaches, yet none have proven effective. While I can occasionally tolerate clear liquids, it tends to happen only half the time and generally when I remain somewhat inactive. Water, however, is something I can usually keep down without issue. I have consulted an overwhelming number of medical professionals, yet the root cause of my distress remains a mystery. Gastroparesis has been ruled out, yet my gastroenterologist has not been supportive or helpful. In addition to vomiting, I experience an array of other symptoms. My nausea is a constant presence, accompanied by persistent headaches and increased dizziness. I often feel chilled and occasionally endure abdominal pain, which seems sporadic and not restricted to any specific region. Brain fog complicates my situation further, making it challenging to concentrate. There could be additional symptoms I'm forgetting to mention. I hold diagnoses of both Postural Orthostatic Tachycardia Syndrome (POTS) and hypermobile Ehlers-Danlos Syndrome, but my doctors do not believe these conditions are responsible for my significant symptoms, particularly the nausea and vomiting. Currently, there is speculation about Mesh Abdominal Lymphatic Syndrome (MALS), but tests have yielded ambiguous results. Interestingly, my appetite has not diminished; I often consume substantial meals, hoping to digest some food before it is expelled from my system. I've also received intravenous treatments that include vitamins and Zofran. While I initially received these infusions weekly, I recently paused this regimen because the Zofran, despite its effectiveness in preventing vomiting, leaves me feeling quite unwell. Typically, on the days I get an IV, I can consume a fair amount of food, which I can retain for about 24 hours afterward. I am 5'8" tall and started at around 205 pounds, but I've lost weight and now weigh approximately 155 pounds. I am female, and I find myself at a loss for next steps in managing my condition. Any insights or suggestions would be greatly appreciated.
Answers (1)
9/2/2025, 9:11:01 AM
OpenHealth AI
I'm really sorry to hear about your ongoing struggle with persistent vomiting and the associated symptoms. It sounds incredibly challenging, especially after seeking help from numerous medical professionals without clear answers. Let’s summarize your situation and outline prioritized next steps to help you manage your condition.
Key Points:
- You've experienced severe vomiting for over a year, with some days where you're able to tolerate clear liquids and water.
- Conditions like gastroparesis have been ruled out, and you have diagnoses of POTS and hypermobile Ehlers-Danlos Syndrome.
- You face additional symptoms like nausea, headaches, dizziness, chills, abdominal pain, and brain fog.
- You retain some nutrition through intravenous treatments but recently paused this treatment due to side effects.
Explanation:
Your symptoms suggest a complex interaction of conditions, and while POTS and hypermobile Ehlers-Danlos Syndrome might not be deemed responsible, they can still impact your overall health and symptom management. It's also understandable that the idea of Mesh Abdominal Lymphatic Syndrome (MALS) is concerning, especially given the ambiguous test results that you're facing.
Next Steps:
Here are effective and prioritized steps you can take moving forward:
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Symptom and Activity Tracking: Maintain a detailed diary to monitor your symptoms, dietary intake, activity levels, and when vomiting occurs. Note any patterns or triggers that could help identify potential dietary or lifestyle changes you might make in conjunction with healthcare professionals.
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Dietary Adjustments: Since clear liquids are sometimes manageable, consider following a low-fiber diet, which may ease digestive stress. Foods might include clear broths, gelatin, electrolyte drinks, and simple carbohydrates like white rice or bread in small quantities. Eating smaller, more frequent meals rather than larger ones may also help.
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Hydration: Continue to focus on hydration, especially with water, as maintaining fluid intake is crucial. If you're struggling to keep liquids down, consider sipping slowly or using an electrolyte solution that may be gentler on your stomach.
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Explore Alternative Treatments: If the Zofran makes you feel unwell, discuss with your doctor the possibility of trying alternative anti-nausea medications, or explore non-pharmacological approaches such as ginger supplements or acupressure, which some people find beneficial.
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Specialist Referrals: Ask for referrals to a specialist in gastrointestinal disorders that focuses on complex cases or a dietitian knowledgeable in managing gastrointestinal symptoms. They might offer new insights or treatment strategies tailored to your situation.
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Therapeutic Support: Given the psychological toll of chronic illness, consider incorporating mental health support such as therapy, which can assist with coping strategies and managing the emotional aspect of chronic symptoms.
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Maintain Open Communication: Continue to advocate for yourself during appointments. Express your experiences clearly and ask directly for further evaluations or tests that may still be warranted given your complex symptomatology.
Supportive Note:
It’s essential not to lose hope, as difficult as things may seem. Chronic conditions can often take time to understand and manage effectively. Keeping communication open with your healthcare providers and actively participating in your treatment plan can help steer you toward finding relief. If you can, lean on support systems, whether friends, family, or support groups where you can share experiences and gain insight. You deserve to feel better, and exploring every avenue of potential relief is worthwhile.
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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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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 - 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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.