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ghennel (@ghennel)

Sick daughter goes undiagnosed

Just Want to Talk | Last Active: Mar 4, 2020 | Replies (40)

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@ghennel

Ethan,
Thank you for the additional groups. I will definitely try posting there.

My daughter, Shannon, has been given some diet guidance and it has helped a bit. She is unable to put weight on and keep it on. She has had 4 CAT scans, an MRI, endoscopy, ultrasounds,loads of blood work and more ER visits than I can count over the years. When they can't pinpoint anything specific they prescribe an anti nausea and pain medications and send her on her way. She opts not to go down the path of pain medication reliance and the pain meds end up causing digestive upset anyways. They know something is off, but no one has dug far enough to figure out where this is all coming from. This started in her teens.

As far as I go, I worry about her every day and am constantly on the search for answers. It makes no sense to me how so many doctors know something is wrong, but no one goes the extra mile to figure it out. It has to be something outside the normal list of disorders. Part of the problem is insurance as well and the limit of quality care she can actually seek out. She is barely holding a part time job because she is exhausted and tells me that she thinks she is just going to feel like garbage her entire life. She is starting to give up hope she will ever be helped. She is 26, I can't accept that for her. So am I okay? No, not really. I am sad that I as her mother, can't fix this for her or at the very least get some answers so she can manage her health problems. It is hard to manage an illness when you don't know what it is.

Thank you for your time,
Ghennel

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Replies to "Ethan, Thank you for the additional groups. I will definitely try posting there. My daughter, Shannon,..."

@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.
JK

@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?

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