Just found out my 3 year old has this. Don’t have much info on this at all and there doesn’t seem to be much out there.
He has epilepsy, severe speech and language delay, still not potty trained, hyper mobility, which affects his joints, he’s aneamic, suffers from a few blood disorders. Is on the “small side” he will be 4 next month and wears 2 yr olds clothing. List could go on. Don’t know if this is all related, or any info would help, I’m waiting for the apppointment but just need some facts, personal experience etc in the mean time. Thanks in advance x