My DS has just turned two and over the last year has seen a lot of different doctors. He has a few minor health problems such as astigmatism, narrow windpipe, underdeveloped hip, and is quite small for his age (height below 9th centile, weight on 25th), but mainly it's that he has been given a label of global developmental delay functionally severe. It sounds pretty gloomy, but no other dx has been attempted so far. He went through the most detailed genetic test available and all came back clear (although doctors seem to think it is indeed something genetic). He also had a brain MRI done with some non-secific findings such as mildly reduced white matter bulk. Basically he is at a level of about 1 year old ATM, cruises but cannot stand alone, bangs and looks at toys but doesnt play purposefully/have imaginative play, really difficult to get him to copy actions, has started babbling saying things like "dada" at about 21 months but now that has gone away and we only have aah and eeh sounds again. He is really lovely and affectionate with the family and siblings, loves meeting new people, responds to his name, is nearly always in a good mood and smiling. We love him to bits but of course getting quite worried about his future and what lies ahead for him and the rest of the family. Will he ever be able to walk and talk, being where he is now. As there is no diagnosis doctors only can offer a wait and see approach. He was assessed at 6-7 month level abilities when he was 11 MO, then at 10-11 months when he was 18 MO. So quite a slow progress so far. Have another assessment coming up and feeling a bit wobbly :( I wonder if anyone reading is or was in a similar situation. How are your LOs progressing? Any hopes for someone like my DS to make some meaningful progress going forward? I am just worried he will stay at 1 YO level forever, only growing bigger. Sorry for the ranting but I even feel a bit better now. Thanks for reading, hope to hear from someone! x
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2 YO with functionally severe GDD... anyone is/was in the same boat?
19 replies
upsydaisy2007 · 03/02/2014 19:59
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