Seeking Support for My Toddler's Ongoing Health Challenges
Hello everyone, I'm reaching out for advice regarding my two-year-old daughter (born in August 2021). We have been navigating a complex health journey, and I am in search of recommendations for the next steps we can take. ### Key Concerns: - She has experienced itchiness since she was an infant. - At the age of one, we were advised to eliminate dairy from her diet; this made a significant improvement in her itching, yet other issues persist. - She continues to use a specialized formula for Cow's Milk Protein Allergy (CMPA) to ensure she receives adequate vitamins. - Her diet remains rather simple, consisting mainly of boiled chicken, eggs, rice, oats, zucchini, carrots, salmon, blueberries, and bananas. - She is very small, weighing under 20 pounds at two years old and has to wear clothing sized for 6-12 month olds. - I also have twin six-month-old babies who are exhibiting similar growth concerns; they each weigh only 12 pounds and are exclusively breastfed. I am on a diet free of soy and dairy. - I feel desperate, as I'm struggling to find a doctor who is committed to solving this complicated situation. ### Observed Food Reactions: - She seems to be allergic or intolerant to several foods, including strawberries, mangoes, coconut, cashew, pistachio, and dairy (both casein and whey), even reacting to things like salami. - She is sensitive to gas-inducing foods like beans, which leads to severe bloating and discomfort. - Recently, after we flavored chicken by boiling it with onion, she had a severe reaction that included gas, restlessness, and diarrhea that night. - We have also noted reactions to mushrooms and sweet potatoes, leading to gas and undigested food in her stools. ### Current Symptoms: - She experiences frequent diarrhea, which can be watery and odorous, often containing undigested food. In her lifetime, I do not believe she has gone two consecutive days without diarrhea. - Her stomach discomfort—bloating and gas—can interrupt her sleep, especially after eating anything outside her core diet. - We are noticing ongoing reactions to foods with unpredictable triggers; introducing something new often results in diarrhea, gas, and sleepless nights. - Historically, she has been a very happy baby, and this change has been concerning as she has never exhibited colic-like symptoms. ### Testing Completed to Date: - We've conducted blood work, urine tests, and stool analyses, which have all come back mostly normal. - Stool tests indicated positive reducing sugars, which may suggest carbohydrate malabsorption. - A pancreatic elastase level of over 800 ruled out pancreatic insufficiency. - Calprotectin levels were below 50, indicating no inflammatory bowel disease. - Her thyroid, kidney, and liver functions were normal, and her IgE levels are within the standard range. - The neonatal metabolic screening at birth did not reveal any major metabolic disorders. - Five stool samples for parasitology returned negative results. - She has seen specialists, including a cardiologist, nephrologist, and endocrinologist, all of whom have reported normal findings. - A consistently high BUN/Creatinine ratio and slightly low globulin with a high A-G ratio have been noted, as well as moderately elevated Vitamin E levels. ### Current Situation: - We have already consulted two gastroenterologists, but both have dismissed her issues as merely a milk allergy. - We are contemplating asking for a biopsy to rule out eosinophilic gastrointestinal disease, as it appears there is an immune response at play—why does her body react negatively to virtually every new food introduced? ### Questions: - Given the combination of chronic diarrhea, numerous food reactions, and ongoing itchiness, should we consider this to be more aligned with allergies/immune issues, or might it indicate genetic/metabolic problems? - Is seeking a GI biopsy the next logical step? - Should we advocate for a broader allergy panel, and what would that entail? - If it were your child, what actions would you take next? I feel incredibly dismissed and aimless in this process. My main desire is to identify her condition accurately to alleviate her suffering and determine the right dietary solutions. We are currently focusing heavily on improving her gut health with a low FODMAP diet, probiotics, and various supplements.
Answers (1)
8/16/2025, 8:02:13 PM
OpenHealth AI
It sounds like you are facing quite a challenging situation with your daughter's health, and it's clear that you are doing your best to navigate it. The combination of chronic diarrhea, food reactions, and ongoing itchiness suggests that there is likely an underlying issue that needs further investigation. Let's break down your key concerns and discuss the next steps you can take.
Main Points:
- Ongoing symptoms could indicate a food allergy, gastrointestinal issue, or other immune responses.
- Seeking a GI biopsy may provide valuable insight, especially regarding potential eosinophilic gastrointestinal diseases.
- It may also be worthwhile to obtain a broader allergy panel to assess additional sensitivities.
- Improving her diet and gut health is a critical focus, and the incorporation of a low FODMAP diet may be beneficial.
Explanation:
Given your daughter’s history of food reactions and persistent gastrointestinal symptoms, her condition could stem from a combination of allergies and immune responses rather than purely genetic or metabolic issues. Eosinophilic gastrointestinal disease (EGID) is one possibility, as it manifests with similar symptoms and can be diagnosed through biopsy.
Testing for more allergies, especially while aiming for a low FODMAP diet to minimize gut discomfort, could provide a clearer picture of what foods to avoid. Since the issue is complex, a multidisciplinary approach involving a pediatric allergist and a gastroenterologist experienced in food allergies and EGID may be helpful.
Prioritized Next Steps:
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Consider GI Biopsy:
- Discuss the option of a biopsy with your gastroenterologist if you haven't done so. This could help rule out eosinophilic esophagitis or other eosinophilic conditions.
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Broaden Allergy Testing:
- Advocate for a comprehensive allergy panel that includes both IgE and non-IgE mediated allergies (like skin prick tests or blood tests). This can help identify additional sensitivities contributing to her symptoms.
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Continue Monitoring Diet:
- Stick to her low FODMAP diet while gradually reintroducing foods one at a time and closely monitoring for any reactions. Keeping a detailed food diary could help identify patterns and triggers.
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Gut Health Focus:
- Consider continuing with probiotics (consult your pediatrician for child-friendly options) to support her gut flora. You might also explore specific nutrients to enhance digestive health, such as zinc and digestive enzymes, under guidance from a healthcare professional.
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Consult Specialists:
- If current specialists are not addressing your concerns, seeking a second opinion from a pediatric gastroenterologist who specializes in complex food allergies or gastrointestinal disorders may also yield additional insights.
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Stay Informed and Advocate:
- Keep a detailed record of symptoms, reactions, and dietary practices to present to any healthcare provider you consult. This information can be invaluable in understanding her condition better.
I understand how exhausting and overwhelming this situation can be for you. It's important to remain proactive and persistent, seeking support from healthcare professionals who listen and consider your concerns seriously. You're advocating for your daughter's health, and that commitment is vital. If you have any more questions or need further clarification on these points, feel free to reach out.
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