Would you see a GP about excessive height

[misdee]

dd2 has been tall all her life. at 6months old she went off the scale for height and weight. no follow up was done.

she is now 7, wears stuff for 10year olds, is very skinny, and long limbed.

we saw our HV today, who hasn't seen dd2 before. she commented that she would be inclined to see a GP. there is a history of hyperflexiability, hypermobility, and heart problems in the family. she says that dd2 reminds her a lot of dh physically (heart condition, now post transplant). dh has long fingers and toes, is very tall (though not excessive for a young man these days).

dd2 does have a heart murmur which has ben deemed innocent by harefield team.

dd1 is hyperflexiable,
dd2 had/has low muscle tone and hypermobility
dd3 isnt
dd4 has benign hypermobility syndrome

Misdee even though there may be nothing to worry about, I would be inclined to try and get referred to someone who specialises in this kind of condition...whatever it might be that hv is thinking of.

That way they can monitor her, and follow up properly...there may be ways to rule out any problems...it will set your mind at rest perhaps.

I think if the HV has suggested it then I would do, it will put your mind at rest if nothing else. Al the best.

Are you thinking Marfans?

I think that I would go, as I'm guessing that the HV is thinking about the possibility of something like Marfans Syndrome, and it would be good to investigate that to cross it off the list as it were

thanks.

i was thinking of telling the GP that HV suggested we see them, as they already think i'm paranoid. i didnt say a word to the HV about this, she picked it up by herself. she obvously knows about dh problems, and dd4 hypermobility as we saw her first before seeing the GP when dd4 started crawling oddly.

i'm not trying to think of anything [head in sand]

Misdee - have wondered same thing about my DD. She is just 3 but v. tall and in clothes for 5/6 yr old. I am slightly hypermobile although it causes no real problems. All of my side of the family are tall and according to my mother I was the same as DD at her age. I'm now a pretty 'normal' 5'8! Probably worth getting it checked out if HV has brought it up but she may well just be tall!

Did she have an echo misdee when her murmur was deemed innocent? HV is thinking Marfan's isn't she but I think that would have been picked up in Peter prior to transplant?

in your case, i'd see the GP about it, mainly for either getting some answers or putting your mind at rest.

dd1 is tall, but not excessively so. her lack of appetite and thirst are apparently linked to her dyspraxia (there's another adult dyspraxic on here who says she has to remind herself to drink water as she doesn't feel hunger and thirst the way others do), but she has had vials of blood taken and a full genetic markup.

yes, all three older girls have had echo's done. dd1 has a leaky valve and murmur, dd2 a murmur. dd4 echo will be done when she is 4.

there has alays been a uestionmark over dh condition and if it a pre-exsisting condition/weakness etc etc. harefield had to extend his bed, as he slept semi upright, and the docs always commented on his long toes and fingers, but at the time, i think they were more concerned about other things which were more important.

I'm sure they would have checked for Marfan's misdee because it can cause complications following heart transplant.

Worth having dd checked though.

i thought they would've checked for marafans, but dh doesnt recall it coming up in conversation with the docs. but does remember them all asking about his fingers and toes. mind you, three strokes on, he may have forgotton the details.

My sis had this fear about her DD - tall hypermobile, heart problem.

Marfans is something that has to be diagnosed by a specialist's opinion, ie, there is no blood test for it to be sure but they assess.

I looked at some of the signs on the website while DN was going through the process (Dr said no BTW).

IIRC One is arm span being greater than height (it is usually the same even in v tall people)

Another is being able to overlap your thumb and little finger around your wrist. I can do this (am 5'4"!) and was gobsmacked at how many people can't. There was another trick I could also do with hands which is crossing your thumb over the palm so it is visible under your little finger at the side of your hand. So I can pass some of the criteria for arachnodactyla (spider fingers!) but when I saw the photos of a marfans hand and a non-marfans hand, mine was definitely like the non-marfans hand.

It might be worth having a look - it may reassure you. Will try and find the link.

I have also been told that people with marfans often have a distinctive facial look. My sister said about prominent eyes (she said Marty Feldman, not sure if he had it).

she can do the thumb thing, just checked [yuk]

will see GP about it, and see what they say.

I haven't managed to find the site I meant but while looking I found two things that contradicted what I had told you :

1 - very long arms in some cases longer span than height but not in all cases like I said.

2 - deep set eyes not prominent

Just goes to show "a little knowledge" and all that!

It's worth asking for a referral though, if other people are starting to mention it.

Take it easy Misdee, it may not be that bad, I fill ALL the criteria described by BalloonSlayer and also have the heart murmur stuff. I'm fine (I think!)

am not worried.

its odd, that for years of worrying, and then no worrying, someone else picks up on something i had past concerns about.

Yes, but they are only picking up on the same pointers, which is, in itself, not a confirmation of the problem. But have it checked, even if it is just to get the "what if" out of your head. And don't worry about what they would think, just make it clear it was on the HV's suggestion.

How is Peter doing? it feels like such a long time away. And how are you doing? long time no see! (I'm an oldie BTW, just hiding behind new name as things not good with the ex)

I'd ask the GP for a referral to a Geneticist in view of the strong family history of heart problems and hypermobility. That way you can definitively rule Marfans in or out.Marfans is not something they would have checked for in a transplant assessment - they are more interested in assessing the failing heart and making sure the other organs would withstand transplantation. If you don't get anywhere with the GP it may be worth asking the team at Harefield (or his local cardiologist) to investigate Peter?