← Return to Sick daughter goes undiagnosedDiscussion
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Replies to "Ethan, Thank you for the additional groups. I will definitely try posting there. My daughter, Shannon,..."
@ghennel It must be so difficult for you. Has your daughter looked on the internet for a mutisystem doctor in her area? We have 1 in Denver. I’ve not seen her but I know she specializes in strange diseases. Will you ask your daughter to give her a call? Becky
@ghennel – I just read about your daughter’s misery. I’m so sorry. I know exactly what you are going through. I have a daughter that lived with an undiagnosed illness for years. My first thought- low producing progesterone- why? Endocrinology explanation? Her abdominal pain , mass felt and poor weight gain reminds me of a young teenage girl I got to know. Turns out she suffered from extreme chronic constipation for years. Her growth was slow, compared to her twin sister as well. The mass felt was a large stool mass. With help of pediatric gastroenterologists this was eventually resolved, appetite returned and she caught up in growth. I noticed you mentioned endoscopic examination but not colonoscopy. Was that done? What are her bathroom habits?
@ghennel I can understand what you are going through as Shannon's mother. I have a daughter and son, and I know if there is anything wrong with either of them it tears me apart.
You mentioned she had been to the Mayo ER. They told her to come back if nothing got better, has she gone back there? Having a condition that took a very long time to get diagnosed locally I now know if that ever happened again I would be heading down the highway to Boston – I live in southern NH.
Medical tests are of course very costly but if she is below a certain income level maybe she could some type of assistance. You mention she has government insurance. Is that ACA (Obamacare)? If so are you sure they won't cover the medical testing?
I sincerely hope that she can get to a top medical facility that will be able to come up with a diagnosis for her. The bigger and better the facility, the more they have seen. Where she is currently being seen is obviously not able to figure this out. She needs an exceptional diagnostician.
Please let us know how she is doing and if she able to get an appointment to be seen elsewhere, somewhere excellent.