I totally missed this thread. Our DD 13 is EDS-H or EDS type 3. She has a great Paediatric physio who is an expert in the area and also brings a continence physio to town to evaluate pelvic floor with transabdominal US and teach exercises. We have been so lucky as this all cropped up only two years ago.
DD was always hypermobile and had much lower performance scores than verbal scores on the SBV, don't know if that is because of hypermobility or not. She struggles even know with eating utensils and writing and is supposed to have accommodations for the latter at school.
Fatigue and headaches are the biggest problem with schooling, apart from handwriting. The physio stresses an ergonomic set up for study at home, chair, footrest, arm rest for typing, computer on a stand etc. she also runs a weekly class for hypermobile kids. We are very lucky as we are in a rural centre and I think this is amazing care.
The physio is becoming increasingly aware of the systemic issues with EDS in addition to joint issues and pain. Reflux, constipation/diarrhoea, postural hypotension, heat intolerance etc. the immune issues are very interesting and not well described. Certainly autoimmune diseases run alongside EDS in our family, poor immune response to vaccination, a propensity towards contracting respiratory illnesses etc. Hard to know what the relationship is as the underlying genetic factors aren't elucidated apart from TNX in a subset of cases.
Interesting if the disorder is associated with giftedness. Now there is a PhD topic.
