Hi Maxine It sounds like Michael had the same problem with his eyes as Shannon did when she was a baby. She had "no useful vision" until 4 months old, and...
Sarah, I think I can speak for everyone here when I say "we" thank you from the bottom of our hearts for all your time and hard work in establishing this forum...
hi everyone, is there anyone here with knowledge on mc cune albright syndrome or does anyones child have it? ive been told my son may have it,ive looked it up...
Hi Maxine I am so sorry to hear how worried and distressed you are. I have looked this syndrome up on several sites and they are mind-boggling. Have you...
susan, i hear you,of course nothing will change michael from being the baby he is,as you know yourself ,its the worry for the future,i really hope its not this...
I saw a show last night on the Discovery Health Channel about a little boy who weighed 84lbs when he was two who lived in the UK. Something with his story...
Hi Stephanie There are a large number of Overgrowth Syndromes, some of which have names but others are so rare or not yet recognised that they do not have a...
dear stephanie,usually there are a lot of little things that all add up as well as ther being a growth issue,maybe you could ask your own regular doctor to...
susan,as usual ,you put it perfectly,i think an endocrinologist would also be able to help rule out a hormonal imbalance etc,just to be on the safe side,...
Hi Maxine I am pleased you volunteered to be a moderator, well done. Shannon has been off school this week, first with sickness for two days, then with a...
susan,poor shannon,give her a hug from us!!!! i hope she recovers quickly,no i still havent contacted the growth foundation,i know i should,imm too busy...
Hi Maxine I thought I would reply to your post on this site, to keep it active. It would be a pity if a new person coming on here was put off because of lack...
thanks ,i agree about keeping this site active,but what can we do in order to get people in our position to use it,it would be great if more people used it ,it...
Hi again Maxine I wonder whether it would be a good idea to mention this site on the Sotos one because I think there are several on there without a diagnosis....
This site is in the links section of the Sotos site, so if anyone were looking hard enough, they'd find it. There are quite a few members here, but I guess...
im sure they will,its too good a thing to let slide! we all get really busy sometimes,i never seem to have enough hours in my world!!! maxine Hair Doctor...
I think it is important that this site is here for those people whose children have an undiagnosed overgrowth syndrome. However many of us (lol I haven't...
That's a great idea Miranda. I agree most post on the Sotos site (my daughter has Sotos), but I started this site anyway, because there may be those who never...
miranda,i agree we should all post maybe once a week,one to support each other,and two to keep it going,can i ask whats your sons story if you dont mind me...
Hi Maxine My computer has been down so I am just catching up with all the posts. Sorry to hear about your Grandmother, but so pleased you got to know her...
susan thanks for the email,i had wondered where you had dissapeared to!! how have you been,i hope well,and shannon,hows she doing? i hope well,regarding this...
I have had difficulty getting into this site recently and wonder whether anyone else has too. Anyway, I have just browsed through the membership list and...
hi everyone ,i gather some are having problems getting on here can someone e mail me on here and see if i can get it? apologies for not being around ,have been...
hi to any new members,we would love to hear your stories and offer any advice,or just listen! sometimes it goes fairly quiet on here so any new members would...
hi im liz and i have sotos sydrome, i was wondering if there has been a breakthrough in what causes sotos syndrome. is it the female gene or the male gene...
Does any one have a problem with their Soto child's behavior? If so, please tell me what kinds of medicines you have tried that seem to settle them down. I...
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