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I seen an episode of "Mystery Diagnosis" on this and it made me think of my son Alex. He is extremely flexible, tall, with long fingers and toes. He just doesn't have the caved in chest, though his bottom rib sticks out farther than the rest. And his arm span is about 2 inches longer than his height. I am only 5'5" and his dad is only 5'9" and Alex has always been between the 95 and 100th percentile for height. At one point he was at the 110% tile.
I might be worrying for nothing but the heart thing, that goes along with the syndrome, scares me. Is it something I should bring up to his doc next month at his 5 year old appointment?
It certainly wouldn't hurt to bring it up to your doctor! I've never heard of it, but I know there seem to be all sorts of syndromes out there that are easy to fit a lot of kids into, you know? My older son has always been in the 15th percentile for height, despite me being 5'10" and dad being 6' ... some kids just vary like that, and hopefully that's all it is for Alex! But with things like a possible heart involvement, it's always best to ask, if only just to ease your worry.
He only has exercise/cold induced asthma. And autism and ODD and sensory issues. He also has some weird knee joints. When bent they look normal but when he straightens his leg his knee bulges out on the inside. If that makes sense. I guess I don't think much of them since they have always have been like that. I brought them up to his doc when he was 2 and the doc said they were fine for now if they weren't messing with him walking. Which they never have, his large motor skills are great.
I'm glad to hear they aren't messing with his large motor skills at least - but what about his fine motor skills, do you think it could be impacting them? I'd definitely watch him, but unless you've got a strong feeling about it, I'd take some comfort from the doctor not being worried at this point. Does he have any EI therapists you might be able to ask?