Thanks for your thoughts everyone, I actually felt better last night than I did before for some strange reason, I guess it was that finally there was a definate answer about the fact he has a "something" and it wasn't just my imagination that it was more than the amount going into his mouth (IE my breastmilk supply) making him lose weight, sometimes the total unknown is worse than when you are told there is something...I think too the feeling of blame I was subconciously putting on myself was lifted.

I wondered if somehow my stubborness to continue breastfeeding etc was contrubuting to his low weight, now I know that what I felt was right and it is more than that, very happy I trusted my instincts, because I believe that BFing him now especially is the very best thing to help an illness of this nature.

yes mel there is still a possibility that it is something that can be cleared up or treated and gotten rid of, because some viruses lay undetected but are quite strong IYKWIM? I think the Specialist is leaning towards a more long term rare respiratory condition but he seems quite optimistic that it would respond to treatment.

Kelli I agree with what you are saying and the more I think about it, I believe understanding what is going on is important. The specialist asked all about family histories to see if there was a flag to start investigations.
Also the general and bronchialoscopy wouldn't probably be as bad it is first seems, I am just terrified of doing these tests and putting him through it to the find nothing again..I wonder how many we'll have to do?

Anyhow I have told DP to take the day off next visit up there so we can make the decision together and DP can listen to what the Specialist thinks so it's not just me relaying information.

Thanks again for listening!