This is a long-shot suggestion, but it might be worth evaluating your daughter with an endocrinologist.
I have complete pituitary failure (pan-hypopituitary). The symptoms first appeared when I was in early adolescence, around 14 years of age. Pituitary problems most often surface during early adolescence as this is a developmental time when the pituitary is most challenged.
Hormones are chemical messengers. There are hundreds of different hormones in the body that guide and regulate the body's many body systems and organs. Hormones are much more than the sex hormones that we readily think of.
My earliest symptoms were GI specific. Persistent nausea with vomiting, low appetite, general malaise, low energy. Well-meaning physicians focused on my gastrointestinal system, and failed to take a broader view. A series of mis-diagnoses ensued. The field of medicine failed me miserably.
Hormones are chief regulators of the gastrointestinal system. Your daughter may have an endocrinology origin as the basis of her distress.
A good resource to learn about basic pituitary function and its role, as well as symptoms and pituitary profiles is the Pituitary Network Association (PNA). www.pituitary.org
Your daughter is at a tender age where her pituitary gland is under heightened developmental demands. It is not uncommon for pituitary disorders to show initial evidence during early puberty. Given your daughter has had extensive gastrointestinal consultations without succinct benefit, it might be prudent to change course direction.
The problem with scopes and CT scans and imaging is that these modalities are limited to detecting physical/anatomical dysfunction. The body is far more than its physical structure. How the body works, the body's physiology, is equally important. Your daughter may have an issue with hormones or other chemical messengers that act on and influence her digestive tract - not identifable on imaging, scans, or scopes.
Ask your daughter's physicians to begin to look outside the box. And begin to move more toward physiological analysis as to what may be influencing her GI a function and less on evaluating its physical/anatomical structure (which it sounds as though you have thoroughly exhausted through imaging scans and scopes).
The process is analogous to a computer. Turn diagnostic attention now to the body's software and operating systems and less on the hardware.
It took years and years for me to be accurately diagnosed with pituitary failure. Despite consultations with well-regarded physicians and top quality access to health care.
Even a low performing pituitary gland can have broad effects on the body's well-being. A consultation with a competent endocrinologist would be worth the time and effort. Look for an endocrinologist with pituitary and HPA axis speciality. Many endocrinologists focus on metabolic disorders, such as diabetes. While this is fine/good if you have diabetes, this would be less than a good fit in your daughter's situation. You could also look for a children's endocrinologist if you live in a larger metropolitan city.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.