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Family Physician
Family Physician, Doctor
Category: Medical
Satisfied Customers: 2592
Experience:  Emergency Medicine and Family Practice for over 26 years
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My 24 yr old daughter has been diagnosed with EDS type-2 hyper-mobilit

Customer Question

My 24 yr old daughter has been diagnosed with EDS type-2 hyper-mobility & is suffering extreme gastroperesis; 6+ local medical attempts for "food tube through nose" assistance failed due to "some kind of unknown blockage in lower stomach or upper small intestine".. no Sarasota, FL local doctors know what to do to help, and have given no other referrals for us.
This has been getting worse for over 3 years now; she can hardly eat anything without severe rapid vomiting (sometimes so bad it makes her nose bleed..and has daily acid-re-flux ). She is already on anti-nausea meds, and some others, to control heart palliation and "fainting symptoms associated with moving from sitting to standing position".
I am afraid she will die if we can't find appropriate medical help for her, as she is unable to take in sufficient nutrition.
Last year she experienced rapid weight loss due to worsening of the gastroperesis; last few months she experienced "rapid weight gain out of nowhere" with no increase in calories, and symptoms still the same. Local docs said "her metabolism must be shutting down due to lack of nutrition". Here periods have also completely stopped this year.
She has also had periods of "spontaneous weird swelling" occurring on localized areas of her body, her whole forehead once,...another time a bizarre "swelled spot" on the side of her torso.... other times swelling in "spots" on an arm or a leg.... the "swellings appear out of nowhere", last a day or two, then "disappear"...
Is there an EDS specialist you can recommend to us please? Very Worried Mom.
Submitted: 1 year ago.
Category: Medical
Expert:  Dr. Phil, MD replied 1 year ago.
Any other medical issues?