Re: Vicky - bone growth, Marfan EDS

[Guest guest]

Thanks Natasa/Ken

I think it looks more like Marfan, just going by photo's on the web, but the feet pictures in particular are just like 's. I can't find anything though on the bumps on their heads, will take them to the doctor.

's looks more like arthritis because it has the appearance of swollen joints in the hands but 's is much more striking particularly his chin which is so like the typical caricature of a superhero when the chin goes in and then down and dead square, both boys had heart murmurs as infants, no one else in the family has any strange bone growth.

Vicky

Vicky - bone growth, Marfan EDS

Vicky, I forwarded you question to a friend whose son has Marfan features, thought she might have some clues… Here is her answer:

"Sorry, I have never heard of bony growths in Marfan. But it is def possible in EDS too. This mom should definitely see a connective tissue specialist. My son does not have that (his bone structure and everything is normal) but has long arms and legs. …. we just came back seeing an Orthopedic surgeon who said we just need to watch him as the swelling is down but he is still limping. He commented that my son must have a connective tissue disorder.We still don't know what kind of EDS he has. His EDS showed up only in the last 3-4 years as he started to grow taller and

taller. He seems to have some sort of EDS along with Marfanoid features."

I thought esp interesting in the light of discussion on Autonomic disfunction and EDS – see that other thread…

Hth

Natasa

I

asked this before but didn't get any answers so trying again. Both

boys have very strange bone growth, 's is much more noticeable than

s as he has it on his face. His chin has developed what looks

like extra bone, if you can imagine Mr Incredible then we are part way

there, it doesn't look normal, he also has huge growth spur thingies on

his feet, resembles Marfit [sp] syndrome but doesn't have the very long

arms.

has his mildly on his feet which turn inwards, he has huge bone

growth on his hands, knuckle area and both boys have lots of very large

boney growths on their head.

Does anyone have any idea what this could be, worried whatever it is

it's getting worse. Paed seen 's feet and described it as

endogenous but that's kind of meaningless, doesn't tell us anything and

besides she is a developmental paed and not specialist in this.