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My daughter is slowly dying

Digestive Health | Last Active: Mar 14 12:49pm | Replies (30)

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@hopeful33250

Hello @juliebryan72 and welcome to Mayo Connect. I am so sorry to hear of your daughter's health issues. I can understand how concerned you must be. It sounds like there are a lot of unanswered questions right now. I see that she has a lot of possible diagnoses. I wish her all the best as she has more tests done in the next couple of weeks.

How long ago did her symptoms begin? Is she taking any medications to help with her symptoms?

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Replies to "Hello @juliebryan72 and welcome to Mayo Connect. I am so sorry to hear of your daughter's..."

@hopeful33250. She was born with a Giant Omphalocele and a PDA. Closure at 6/mo. and piece put in her heart at age 7. She has been to numerous doctors since for GI issues and heart follow up. She just had a cardiac MRI which showed Atrial Septal Defect (ASD) as well. She was hospitalized on Jan. 6th for sever stomach pains (level 9 pain) and vomiting. We thought she had a blockage. She had a CT scan and that is where it all began. Her cardiologist scheduled an appointment with us this Friday to go over the IVC. Her liver Dr. is awful and will not address any questions over the phone. Looking to get discharged so we can find another doctor that will respond to questions and not make you wait months out. She isn't currently on any medication since we don't know all the answers. I just ordered her compression socks and leggings to avoid a possible DVT (but doing all this from our own research). All doctor's say is her case is very complex, but not giving us any guidance or answers. It's frightening and frustrating.