Seeking Guidance on Next Steps for My Daughter's Health
I am in need of expert opinion on how to proceed regarding my daughter's health situation. Born prematurely at just 26 weeks and weighing 1 lb 6 oz, her time in the NICU was quite challenging, marked by several complications such as infections, a urinary tract infection, blood transfusions, and two heart defects. For her entire 100-day stay, she relied on glycerin and milk of magnesia. Her condition involved significant bloating, leading to a cycle of alternating between TPN and drainage due to her discomfort and vomiting. After we finally brought her home, we continued with milk of magnesia and Mylicon to manage her gas. We tried various strategies to help her, like elevating her feedings and doing bicycle kicks. However, as she nears her second birthday, her issues seem to be worsening. Despite ongoing use of milk of magnesia, lactulose, Miralax, senna, and both liquid glycerin suppositories and enemas, the latter treatments have proven ineffective. The other laxatives have become less effective over time; any relief they provide lasts only about a week before her symptoms return. Her fecal calprotectin level is elevated at 160, but her white blood cell count remains normal. A barium enema revealed no structural abnormalities but indicated significant stool retention. We also conducted anorectal manometry; however, the testing was limited due to her age, although they did confirm her presence of the anal reflex. Despite working with a nutritionist to increase fiber intake and ensure proper hydration, my daughter has been regularly reliant on laxatives since birth. Even with 10 ml of senna, she only has a bowel movement about once a week, occasionally stretching to every 13 days. She has suffered from anal fissures and severe rashes during bowel movements, which significantly affect her sleep. Furthermore, she experiences intermittent vomiting and extreme bloating that makes her abdomen appear distended. While I try to reach out through MyChart messaging, I often do not receive prompt responses from her doctor. We have a scheduled appointment at the end of the month, and I am eager to establish a clear plan of action. I don’t want to seem like an overly anxious parent who relies too heavily on online searches, but I wonder what specific questions I should be asking. Should I advocate for additional testing such as upper and lower endoscopy, or would that be an exercise in futility? At such a young age, it’s challenging for her to communicate her discomfort, yet we know she is suffering!
Answers (1)
2/3/2026, 11:20:45 PM
OpenHealth AI
It's understandable that you're feeling overwhelmed about your daughter's ongoing health challenges. The situation you've described—a history of significant gastrointestinal issues, reliance on laxatives, and elevated fecal calprotectin levels—indicates that further evaluation and a customized management plan are essential. Here’s a structured approach to help you effectively communicate with your healthcare provider and address your daughter’s needs.
Key Points:
- Chronic Constipation and Symptoms: Your daughter has persistent constipation, bloating, intermittent vomiting, and experiences discomfort during bowel movements. These issues can significantly impact her quality of life.
- Previous Interventions: You have tried multiple laxatives and dietary changes with limited success, raising concerns for potential underlying issues.
- Next Steps for Evaluation: Additional testing and a tailored management plan may be necessary for better control of her symptoms.
Explanation:
The persistent symptoms your daughter is experiencing may suggest functional gastrointestinal disorders or other underlying conditions that have not yet been fully evaluated. Continued reliance on laxatives indicates that her digestive system isn’t functioning as well as it should, especially for her age and development.
Actionable Guidance:
-
Prepare for Your Appointment: Write down a detailed account of your daughter’s symptoms, including frequency, duration, and any patterns you’ve noticed. This information will help her healthcare team understand her condition more clearly.
-
Questions to Ask:
- What is the significance of the elevated fecal calprotectin level, and what does it suggest about her intestines?
- Considering her history, should we proceed with upper or lower endoscopy to rule out any structural issues or other underlying conditions?
- Are there alternative treatments or therapies, such as biofeedback or guided dietary adjustments, that could help manage her symptoms more effectively?
- What options are available for managing her severe bloating and discomfort, especially since current laxatives are becoming less effective?
-
Consider a Multi-Disciplinary Approach: Ask if a referral to a pediatric gastroenterologist might be beneficial. Specialists in this area can provide more targeted investigations and treatment options.
-
Track Symptoms: Maintain a symptom diary leading up to the appointment, noting any reactions to dietary changes, medications, and bowel movements. This can provide valuable information for her healthcare provider.
-
Explore Alternative Therapies: While maintaining an open dialogue with her current doctor, it might be worth exploring therapies such as physical therapy for constipation or specialized dietary interventions with a pediatric dietitian experienced in digestive issues.
Reassurance:
Your commitment to seeking the best care for your daughter demonstrates your dedication as a parent. It’s completely valid to ask questions and advocate for your child’s health, especially given the complexity of her medical history. The goal is to work collaboratively with healthcare providers to find an effective plan moving forward.
Please feel free to reach out if you need further guidance or support as you prepare for the appointment.
Related Questions
Seeking Insights on Gastrointestinal Issues
Greetings, I have recently been released from care by my gastroenterologist, who believes he has exhausted all avenues of exploration. Unfortunately, my issues remain unchanged, leaving me in a state of confusion, and I'm reaching out to see if anyone might offer some suggestions. I am a 20-year-old female who has been living with chronic illness for the past five years. The onset of my condition is still a mystery, as no clear triggers have been identified. The most distressing symptom has consistently been severe nausea, which has persisted without relief. **Gastrointestinal Symptoms:** - Continuous nausea for five years, which occasionally intensifies after eating or drinking - Sharp pains in the upper left region of my abdomen, which can occur after meals or spontaneously - General discomfort within my stomach area - Difficulty in gaining weight - Feeling full after consuming only a small amount of food - Disrupted sleep patterns due to these gastrointestinal issues keeping me awake or abruptly waking me during the night **Gastrointestinal Testing:** - MRI of the abdomen and small intestine showed normal results - Endoscopy and colonoscopy yielded clear findings - Doppler scan for compression syndromes came back normal - Barium swallow study indicated delayed gastric emptying - Brain MRI was also normal - No improvement observed with MCAS treatment **Diagnosed Conditions:** - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (began alongside gastrointestinal symptoms) - Dysautonomia (developed concurrently with gastrointestinal symptoms) - Recent diagnosis of heart failure - Symptoms resembling hypermobile Ehlers-Danlos Syndrome I appreciate any insights or ideas you can share!
Understanding Mild Fecal Loading on X-ray Results
For several months, my digestive processes have been drastically sluggish, leading me to believe it stemmed from a medication I was prescribed. Recently, I underwent an abdominal X-ray and became curious about the interpretation of the term "mild fecal loading." I understand this refers to the presence of stool in the colon, yet it feels quite ambiguous. Given my severe constipation, I started to worry about the possibility of partial fecal impaction, particularly since my gastrointestinal tract seemed to be almost non-functional for a duration of four to five months. Here’s what the X-ray report stated: *FINDINGS: No significant free air is observed. Air is distributed throughout both the small and large intestines leading to the rectum. There are no dilated bowel loops detected. Mild fecal loading is noted in the colon.* To manage my situation, I was taking the maximum recommended dosage of magnesium hydroxide almost every weekend in an effort to alleviate constipation and avoid impaction. The X-ray was conducted roughly a week after I consumed 60 mL of magnesium hydroxide, while primarily relying on liquids throughout most of that week. Does this imply that there shouldn’t be any signs of partial impaction present?
Concerns About a Friend's Rapid Weight Loss and Persistent Nausea
I am writing this on behalf of my close friend, who is a 16-year-old girl (soon to be 17) and doesn’t have access to Reddit. I’m extremely concerned for her well-being, especially given her experiences with ineffectual medical professionals. Approximately two years ago, she weighed around 140 pounds and stood at 5 feet tall. Currently, she has dropped to a mere 96 pounds, and her weight continues to decline. Shockingly, 30 of those pounds vanished in just a month. She experiences intense stomach pain daily, often so severe that she leaves school in tears. She describes the sensation as cramping, and unfortunately, no available treatment—including prescribed Zoloft—provides her any relief; she simply has to endure it. For a period, she was frequently vomiting, often in the mornings and sometimes at night, although that has lessened a bit. Her appetite has dramatically decreased, and even when she feels hunger, she claims that she can't eat. Nowadays, she can only manage small meals after 5 PM. She has undergone blood tests and various other examinations, but she is now facing the anxiety-inducing prospect of undergoing endoscopic exams. She suspects it might be cannabinoid hyperemesis syndrome (CHS), as she typically consumes cannabis daily, yet I personally doubt this diagnosis. It’s important to note that she does not exhibit signs of an eating disorder; that was my first fear as well. However, the level of pain she endures seems far too high for her to inflict upon herself. Despite her significant anxiety regarding medical appointments and tests, she is motivated to seek help because of how unwell she feels. If anyone has insights or suggestions, I would be grateful for your input. Watching her deteriorate physically is incredibly painful, and I want to do everything I can to support her.
Concerns About My Brother's Frequent Vomiting
At 17 years old, I find myself deeply concerned about my 10-year-old brother who has severe autism and is largely non-verbal. His inability to communicate means he cannot express whether he feels discomfort or pain, which adds to my worry. Lately, it has become increasingly alarming as he tends to vomit every few weeks, leading to severe dehydration. This has necessitated hospital visits for hydration since he refuses to drink water when he is unwell. I've mentioned to my parents that this recurring issue doesn’t seem typical, particularly because he has experienced this 4 or 5 times over the past 6 weeks. Unfortunately, they dismiss my concerns, urging me to stay out of it. His pediatrician has mentioned that digestive problems can be common among autistic children, a notion I understand is accurate. However, I still can’t shake the feeling that there might be something more at play. While he had fewer vomiting incidents when he was younger, the frequency has noticeably increased over the past year. The number of hospital visits for dehydration is staggering, and although he sometimes improves after receiving fluids, there have been occasions where he had to return for additional treatment. I apologize if my explanation lacks detail; I created this account specifically to reach out for advice. If any additional information comes to mind, I will be sure to share it.
Digestive Distress
Greetings! I'm an 18-year-old female with a height of 168 cm (5'6") and a weight of about 58 kg (130 lbs). I am not currently taking any medications. My digestive issues began a few months ago, marked by nausea, worsening menstrual cramps, and the onset of acid reflux. I took omeprazole for a brief period of two weeks, and while it provided some relief, the reflux symptoms returned, albeit slightly diminished. Currently, I feel less nauseous, but a new wave of symptoms has emerged. My stomach grumbles incessantly, I experience burping despite not having eaten anything, and passing gas has become a struggle; it feels almost forced. Additionally, I endure cramping in my stomach while having a bowel movement, and my stools have taken on a yellowish hue and softened considerably (a notable change for someone who was previously constipated). I also suffer from heartburn, and specific foods make my stomach bloat excessively, resembling that of a few months into pregnancy—and the sensation is akin to having consumed a liter of water in one go. My lower abdomen is consistently bloated and feels firm to the touch; even light pressure from my boyfriend causes discomfort. It’s worth noting that I fell into a habit of skipping breakfast since middle school, opting to eat larger meals in the evening. I’m not certain if this is contributing to my current issues, but I thought it was relevant to mention. Lately, my appetite has diminished; while my weight remains stable, I often feel full quickly or, conversely, I eat but don’t feel satisfied—this is unusual since I've always tended to eat until experiencing discomfort. After a while, I often feel weak and my stomach starts to hurt. What might be behind these ongoing problems? Daily discomfort has become a norm for me. I haven’t undergone any medical testing and have not consulted a doctor, as my mother dismisses my concerns as hypochondria. There are also no gastroenterology specialists available in my town. Any insights or suggestions would be greatly appreciated!