My daughter is slowly dying

I am so sorry to hear about you and your daughters struggles. I had a partial blockage of sm intestine and v couldn't get any help, lost 72 lbs in 3 months, finally went to emergency room at MD Anderson in Houston and they treated me. Might be worth a try if you haven't already. They are incredible!

Im deeply sorry for your daughter , and your family . Can’t understand that here we don’t have any resources to help her any further in special regarding to her nutrition.
On the other hand check with people I. The hospital/ doctors office to get help for her doctors bills as well they have assistant of different kinds to help people that can’t afford to pay her bills .
I am trying to imagine her situation to look at her body and how much affects her emotional , and having a 6 years child makes even harder .
I will make a note to pray for her and your family because only the LORD JESUS through HIS powerful Holy Spirit can guide and comfort you all with wise decisions for this situation and any other. Sending love hugs and prayers ❤️

Hi Tracy,

My daughter is 20 and having GI issues as well. She is missing part of her IVC, her spleen isn't functioning properly, her liver is malrotated, they think she has portal hypertension and she has varicies in her abdomen. She is having a GI emptying done this Friday and an endoscopy done next Wed. at PENN to see if she has esophageal varicies. We actually live in Warminster, PA so I will be calling Dr. Brody. She currently sees a Dr. Chan at PENN and we are not happy with her. She is scared that she is going to die. Any thing else you may suggest for us?

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?

@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.

Hello @juliebryan72

I can certainly understand your frustration. You and your daughter have been through a lot since her birth. Have you considered having a consultation at a multi-disciplinary medical center. I'm thinking of a facility like one of Mayo Clinic's three locations (link to appointment information is http://mayocl.in/1mtmR63) or a university medical school? Health care facilities such as these are the best option for complicated cases like that of your daughter.

Often virtual appointments are available. Are you near a facility like this?

Her Cardiologist, GI and Hepatologist all are at University of Penn in Phila. She is anemic and here Hematologist is at Doylestown hospital that Penn just bought. we have doctors at Children's Hospital of Phila. that are trying to help as well and nothing. I will try a virtual appointment through Mayo Clinic, thank you!

I second getting the options at better hospitals like any Mayo Clinic, Cleveland Clinic ( in CLE is incredibly great ), John Hopkins , MD …. So sorry for all she’s going through . You need a team of Dr’s all in one place like what I mentioned above 👆. It’s worth the try . God Speed . 🙏

I hope your daughter is doing better I'm so sorry that she's going through that. I was on Ragland for a couple of years my doctor's company cold turkey not fun going cold turkey bad side effects going cold turkey. I hope she's doing better prayers go out to you 🙏🙏😇😇

I was not born with what your daughter had but I did have a ASD closure when I was 28 years old I'm 7 years ago and it is the pfl cruiser and I do have other heart problems in GI problems I do I'm so sorry I know how frustrating it is I'm so sorry I'm alone the urgent and pain we just lost a sister to complicated medical complications are prayers go out to 🙏🙏thoughts go out to you