eds or cp??

hiya my daughter was born at 28wks, no bleeds, home at 3months without o2, shes 30 months old, she walked at 27 months old, still using a kaye walker outside, she has a long history of problems...and is very complex so here goes....jejunal tube fed continous via pump due to, severe reflux with aspiration, gastroparesis, pseudo-obstruction,colitis,backwards peristalisis wears a drainage bag 24hrs a day from a gastrostomy to drain stomach, hypoglycemia, poss caused by growth hormone processing prob, high bp, shes hypotonic, an has hypermobility (diagnosed as ehlers danlos type 3) she was very delayed up til age 2, but is slowly catchin up, but still delayed by 6-8 months poss more, mobilitys very poor, xrays showed hip dysplasia, hypoplastic sacral iliac wings and joints, she has a weak left leg, an grossly overpronated feet the left much worse which she drags an it turns out wards, ver fatigued an in pain with lower joints. back-downwards. ...................so my question is can all this realy be eds3?? or is  it poss that she has cp of some sort?? its her funny left leg that gets me....looks odd!  an gait is poor. rheaumatology says eds3, gastro agrees, but genetics dont??? x

[snobbig2]

Have you looked into PVL?  periventricular leukomalacia    My son has a very mild case and now has epilepsy as well.  He was spec ed and included till middle school, then the **** hit the fan and his memory, motor, and vision problems proove PVL.  Wished I had know years ago.  Good luck, sounds like you have a bunch of medical needs to address and that you are a great capable mom.