Hi whitest
Sorry i didn't get the chance to get back to you last night. I'm not really sure where to start with our story, as it is quite lengthy i may leave it until another time. Beckwith Wiedemann syndrome has never been mentioned as a possibility for our son, so i don't have any knowledge of that, but i may be able to give you a 'laymans' view on some of the other possibilities once you have seen your geneticist. What i do know however is that all of the syndromes relating to overgrowth of a limb are very rare. I guess there is some comfort in this, as your sons larger arm may well turn out to be just 'one of those things', something that makes him unique as another poster said. I also know that the rareness of the conditions means that many medics have little knowledge of them which can lead to some frustrations! We have seen doctors that have been unable to tell us anything, and like you i appreciate their honesty, but we have also had doctors wade in with a diagnosis when they know less about the conditions than we do! I am sure your geneticist will be the best first stop for information.
But to answer your questions (as this is already turning into a huge post!, our son is fit and well, and the problem with his arm has not stopped him doing anything. He is a joy, and a normal cheeky 5 year old! He has had some testing, but like you i was not keen to do too much, certainly in the early days. He has had xrays, ultrasound, various blood tests (not really sure what for!). He also has an operation on his hand when he was 2 yrs old to remove some excess tissue, and some genetic testing was done on the tissue, but with no significant results.
We are hoping we may get some reliable answers quite soon as we now have a referral to see a team at Great Ormond Street hospital in London which we have found specialises in overgrowth conditions.
I know what the worry is like and found it all very difficult to cope with, particularly in the early days. So please do try to enjoy these precious first few weeks, they really are over too soon!
I would be happy to talk more in private, off board, if you would like to. Please let me know if there is anything else you owuld like to know, and tell me more about your son when you have a chance.
I do hope your geneticist appointment goes well and you get some answers - let me know how you get on.