coping without a diagnosis

[cagb]

FIrst time poster here after much lurking and picking up good advice.not sure if this is the right place to post - please advise!
My 3 year old DS was born with some potential problems that we have been unable to get a diagnosis for. He is fit and well and leads a completely 'normal' life ie his 'problem' does not stop him doing anything. After 3 years of appointments and test we are no nearer to finding out what has caused this, or what the prognosis is for the future. The most information we have been able to get out of all the specialists is that it is either a very serious syndrome that will progress or just 'one of those things' that happen but which will not get any worse.
i have coped with all the uncertainty well (mainly!) until the last few months. i can't seem to get the worry that it will develop into something serious out of my mind, feel v emotional alot of the time, with an underlying feeling of being scared. just wondered if anyone else has faced the same sort of issue and how did you cope?

Hi chipmonkey, i must come over and see how your all doing? I have been caught up in my little world but its time to venture out of it! Hope you amd yours are all well

Not too bad at all. Ds4 got scalded quite badly over a month ago now but is much better now. Lots going on with the April 08 group. Sadly Christmaxpixie died though. She hadn't been on in a while but Flight, who was a friend of hers told us the sad news
We are all here

Hi gemprincess
Good to hear from you! And i know exactly what you mean about the old posts bringing back feelings you thought you had a grip on. Which was partly my reason for bumping the thread. I am still really struggling with it all, and happened to come on and read what i had written 2 years ago, and thought, well i am not really any further on! Although in a sense I am in that i have just started getting some 'help' after coming to the realisation that i can't get through this all on my own. So i am 3 sessions into a course of CBT. It's early days,and its tough, but seems to be starting to make sense of the situation i find myself in.
On a much more positive and less self indulgent note, my DS is well with no progression of his problems.
How have things been for you? Has your ds been well? You have said you don't have a full diagnosis yet, how are you coping with this? Sounds like his nursery session was tough. Hope to hear more from you. Take care x