My 11 yo daughter has Eosinophilic Esophagitis and last year began having loose joint issues, tearing of Achilles tendon, poor control of her feet and hands - thus more injuries. In my constant health research online, I stumbled across EDS...it explains and describes she and I perfectly (including the pregnancy issues).
We've just seen a rhumatologist who gave her a dx of hypermobility, but as I understand people can have a combination of connective tissue disorders?
How do both of us get tested and diagnosed fully? What type of Dr. requests or runs the necessary testing?
There is now a newly named disorder linking EoE to CTD aptly named "EoE-CTD" (lol - brilliant!) but I need a Dr. who can help us navigate both.
My daughter is now tube fed and on elemental formula - even with that she is having trouble with her esophagus feeling "clogged" or squeezed to the point where it's hard to swallow spit or drink water. - I think it's CTD related since her last biopsies on formula came back Eosinophil free.
Any help and direction for testing and medical care is much appreciated!
Hugs to all!