DLA application doesn't need a diagnosis. Its all about how much extra care a child needs compared to a NT child of the same age.

Well I've just spoken to the geneticist and she is meeting the radiographer on Wednesday and will send me a full report after that. In the meantime, she did try to answer my questions and her 'slightly unusual looking brain' means dysmorphic features which would have been present when the brain first formed. The immature brain meant that myelination was delayed. I've googled it and it seems it would definately explain the sensory issues and the motor. Myelination is genetically determined so nothing to do with the chicken pox she had at 6 weeks, although this might not have helped matters. She couldn't tell me what this meant for DD2's future.

Does this sound familiar to anyone? I'm in the process of claiming DLA so think the report would be useful to send with this. Hope I get it soon.

Antonia Clark at St George's is dd2's neuro - she's v good.

i actually rang her sec and asked re results btw, as we had a paed appt coming up and wanted them to be avail (after the physio photocopied the scan details lol)

we now even have a disc with her mri on it lol, in case anyone asks for it in the future (we move a lot...)

they were all v lovely, and we just got an appointment with her at the next clinic she did locally.

Ah. Epsom. Trolley. Say no more.

Our geneticist is Dr Elmslie. She's based at St Georges but comes to Epsom once a month. I'll give Juliet a call tomorrow, it's worth a shot as noone else calls me back. Fingers crossed someone will speak to me tomorrow. Thanks for the tips!

You could try. I've never spoken to her myself, but she did both our MRI reports, spotted something nobody else saw in the first one (and I mean that professors of neurology at GOSH didn't see it ) and people I have spoken to seem to rate her. Mind you, the only reason I saw her first report is that someone carelessly left the MRI photos on a trolley in DD1's room in a particularly useless local hospital and I raided it, found the report and googled the results. . But that's not her bad, that's the local muppets.

Which geneticist are you dealing with?

I don't know who did the report, all we've had is a letter from the geneticist, as she requested the MRI. We've not heard from anyone else. Should I ask to speak to this person, does she examine all the paed MRI's? There must be a more detailed report somewhere for me to get hold of, there's no way the paed or other dept's would have had this same vague letter that I had. As someone said above, it was seriously dumbed down for me.

Who did the report at Atkinson Morley, MGC? Was it Juliet Britton? Our experience is she is very very good and I'm surprised you've got such a duff report if that is where it is from.

Brandy, thanks for explanation

Arabica, that's great you had an interview with the professor after each scan and a follow up letter. I really hope I can speak to someone this week as the more I think about it, the more I want to know. My list of questions has gone from 3 to 8 now. We were at St georges so not far from Hammersmith, maybe we should have gone there as it's not much further.

I think you should have received more information. DD has had three MRIs and we got an interview with the professor who scanned her, straight after each MRI was done: am aware this is unusual, as the scans usually have to be sent elsewhere for analysis. We also got a follow up letter explaining, basically, that after sharing her scans with some colleagues aborad, there are still bits of space in her brain and some excess fluid 'of uncertain clinical significance', ie, they don't know! Anyway good reason to choose Hammersmith hospital IMO.