Im having a lot of problems getting to the bottom of my sons condition. My Dr's seem to just fob me off. My son was diagnosed with severe ehlers-danlos vascular syndrome but nobody can tell my why my son also had pyloricstenosis and a cleft lip and palate with limited speech and severe learning problems. Has anybody ever come across a case of EDS with cleft lip and palate and pyloricstenosis. I have only found one reported case of EDS with a cleft palate. But still that is not the case with my son as he has the extra symptoms which are nothing to do with EDS. The closest thing i have come across is Ehlers-Danlos syndrome, progeroid form. But again i do not know anyone who knows anything about this condition. Could anybody have any ideas on what my sons condition is?Reply Follow This Thread Stop Following This Thread Flag this Discussion
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