Concerns Regarding My Grandmother's Health
Age: 79 Gender: Female Weight: Currently underweight, but I'm unsure of the exact figures. Approximately four years ago, she suffered a stroke, but her physical health appeared stable following that incident. However, around a year ago, she began experiencing difficulty with mobility, which has progressively worsened to the point where she is now unable to walk. In the past two weeks, her condition has declined further; she has been less responsive and is struggling with her phone, neglecting to prepare meals, among other concerns. On Saturday, March 15, I visited her and observed that she had managed to get up from the bathroom on her own and was able to walk slowly towards me. She engaged in conversation with me as if everything was normal. By Monday, March 17, her inability to walk became evident, prompting my mother to have her hospitalized. Initially, the medical team suspected Parkinson's disease or dementia. However, after conducting a spinal tap, they discovered several abnormalities, including an elevated count of nucleated cells and possibly red blood cells. Due to these findings, she was started on antibiotics to treat Lyme disease. They conducted an MRI and what I believe is referred to as an EEG scan, which indicated abnormalities that led to potential diagnoses, including herpes encephalitis; however, the symptoms did not align perfectly, prompting consideration for Creutzfeldt-Jakob disease (CJD). While the medical staff has not directly mentioned CJD to us, we have reviewed the report from the scans, though it is now three days old. As of March 24, her condition is alarming—she is nearly non-responsive, unable to walk, reliant on assistance for eating, suffering memory loss, struggling to form coherent sentences, and experiencing hallucinations of men on the walls and noise from parties. She appears to be deteriorating rapidly. What perplexes me is that we regularly exchanged messages during football matches. Recently, she stopped responding to my texts. Yet, two days ago, she sent me a message in relation to a conversation from two weeks prior, saying, "that was good👍", complete with emojis. Shortly thereafter, she sent two bizarre messages saying "klik" and "Jeg llkal", which are nonsensical compared to her earlier text. How is such a drastic change in communication possible? Why have the doctors not brought up the possibility of CJD if it has been on their radar for over four days? To recapitulate, the medical team has mentioned these potential conditions: Parkinson's dementia, Lyme disease, herpes, CJD, and delirium. Thank you for taking the time to read my concerns; it has been quite lengthy.
Answers (1)
3/24/2025, 6:01:24 PM
OpenHealth AI
I'm really sorry to hear about your grandmother's rapid decline in health. It sounds like you’re going through a very challenging time, and it's understandable to have many concerns as her condition evolves. Let’s break down your main points and focus on how to support her effectively.
Main Points:
- Current Health Status: Your grandmother is experiencing severe cognitive and physical decline, which raises a number of medical concerns.
- Potential Diagnoses: The medical team is investigating several possibilities, including Lyme disease, herpes encephalitis, and other neurological conditions.
- Communication Changes: The erratic communication you've observed—normal one moment and nonsensical the next—can be disconcerting and is likely related to her neurological condition.
Explanation:
Your grandmother’s recent decline could be linked to various underlying health issues, especially given her history of stroke and the recent hospital findings. The combination of physical immobility, cognitive changes, and visual hallucinations suggests a significant disruption in brain function or could indicate a severe infection or neurological disease. The doctors suspecting conditions like CJD are serious and often arise when there are rapid changes in behavior and cognition, but they must confirm any diagnosis through further testing.
The sudden change in her ability to communicate could stem from fluctuations in her cognitive state, which can happen with various neurological disorders. Additionally, medications, infection, or even delirium can lead to these episodes, affecting how clearly she expresses herself.
Next Steps:
- Follow Up with the Medical Team: Make sure to have an open and honest conversation with her doctors about any new findings and their plans for diagnosis and treatment. Ask specifically about the potential of CJD and any other relevant testing that may be needed.
- Monitor Symptoms: Keep track of her symptoms closely, noting any changes in her condition. This diary can be very helpful for her doctors.
- Be Present for Support: Continue visiting her if possible, offering reassurance and emotional support. Your presence can be grounding for her.
- Family Decision-Making: Consider discussing with the family about how best to provide care and where her needs might go for home health aide services or rehabilitation if appropriate.
- Educate Yourself: Learn more about the suspected conditions, as understanding the information can help you feel more empowered during conversations with her medical team.
It’s a difficult situation, and it’s normal to feel overwhelmed. Stay engaged with the healthcare team and support each other as a family. Your grandmother deserves the best care possible, and advocating for her needs is essential right now. If you have more questions or need further clarification as her condition progresses, feel free to ask.
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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.