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.

hi mumgoingcrazy, my son has hormone problems and the pituitary gland sends all the hormone signals to various parts of the body to keep it working in order. His being small and partly damaged explained to me why he is hormone deficient

Some unfortunate people dont have a pituitary gland at all and are on several daily medications daily just to keep the body functioning

Apparently the geneticist is in on Monday so will call her then as she is the one who requested the MRI and also sent our letter with the vague results. Hopefully she will give me a copy of them, or at least shed some more light on it. Thanks for the tip.

I'd hoped the paed or a neuro would have given me the results as I think they would have elaborated more.

MGC, you could probably get hold of a copy of the actual scan. They usually dump the pictures to CD to mail around the NHS internally, so someone somewhere should be able to get you a copy. Otherwise there's a v high likelihood that you'll finally get to talk to someone intelligent but they'll be no help because the MRI got lost in the post. Great Ormond Street lost DD1's first MRI for nine months just sending it from one department to another within the same building.

Brandy77, excuse my ignorance but what does it mean to have a small pituitary gland?

I definately need to know more details of this MRI, being told DD2 has an unusual looking brain is just rubbish.

and do you know i was so fortunate to be told this face to face by my sons paed in London, and he was so sympathetic, i would have been truly upset to get a letter like you and the other ladies have

my sons first mri scan was read as normal, when an experienced radiographer studied it, he said my sons pituitary gland was too small at the front and part of it missing at the back. How that got missed is beyond me, think it does depend who reads the scans

Noone is around until Monday apparently, however I did speak to a friend of mine who happens to be a neuro physio and she feels as DD2 had such a long time without appropriate sensory input that could lead to an immature brain and also one that looks 'unusual'. She did shed some light on it, and also thought that if there was anything to worry about, they wouldn't have just sent a very brief vague letter without speaking to me.

I still want one of the professionals to answer my questions, but I'm not all stressy about it now. The whole thing just seems so unprofessional.

as an aside - we went to the cdc for something else (can't remember what, physio maybe) and the therapist saw the results were on the file, so asked if we had had them. we hadn't, so she photocopied the scan results page for us.

maybe the gp's receptionist might know if the full results are on the file? it'll give you some technical terminology anyway...

tbh i had dx cp myself at 6 months lol. the official dx was no surprise, (in fact i remember finally saying to the slt, with totally inappropriate glee 'we got a dx! she has cp!' which must have made me sound like a munchausen's case, but it was just such a relief to have someone confirm what was going on...

hope you manage to get hold of someone today to find out what on earth 'unusual' means. honestly, there's dumbing down for parents and then there's incomprehensible...

I think we're going the same way as you madwomanintheattic. She has dev delay but wouldn't be surprised at all if we ended up with a cp dx. As Riven said above if she has a motor disorder (which she does) it'll be a cp dx if nothing else.

Feelingbetter, hope you are ok!!! Very frustrating to have left the MRI to DP. They never ask the right questions. I hope you get some answers too. I'm starting to feel we might never know, but I would like to get to the bottom of this very vague letter.

do request an appointment with the neuro - like riven's our second mri was much more useful and the report listed all the damage etc.

i would say though, that whatever the mri shows, it still isn't a definitive answer as to what you can expect either physically or cognitively...

i took dd2 along to the neuro appointment with me. the neuro was quite surprised at how able she was, given the detail she was discussing with me. of course, it can work both ways, with little signs of damage on the mri and children with complex needs.

that said, dd2 wasn't officially diagnosed cp until two - she was just dev delay before that (although we were discharged from scbu with a list of referrals for physio/ slt/ sn hv etc... ) i would hazard a guess they were delaying the inevitable and reducing the possibility of a med neg claim, but hey ho.

How crap.
Ours didn't go that much better really. Well, I don't think it did as it was yesterday and I was stuck in hozzie myself, so DP had to go alone .
Still very reluctant to give any kind of prognosis/diagnosis (well, I think they are - DPs demanding questioning skills are not quite up to mine - he probably just nodded a lot), but they are now more sure that his brain damage is not caused by the hypoglycaemia alone. It seems likely that there was some underlying condition/incident shortly before, during or after the birth.

I'm so annoyed that I couldn't be there to see the scans and interrogate the neuro, but I'll have to be patient and wait for the next appointment.

So bloody annoying isn't it? Go through it all and end up in the same place as before, except with more questions!
Hope you get some answers soon x

The only dx we have is Dev Delay and Sensory Processing Disorder. Some brain damage was expected to be picked up by the paed, OT and geneticist so we were surprised, however maybe an 'unusual brain' might be some damage. The Geneticist sent our letter as she requested the MRI, which again I thought odd (as well as receiving results in the post). I would really like to speak to a neuro or at least paed if anything.

The letter was literally 4 lines long and as I said above that was all it said.

By the way, still can't get through to anyone today. Typical!

Tbh I think some of it is just how clever the person looking at the MRI is. From the same MRI (from different people) we have had diagnoses of polymicrogyrism (wrong) delayed myelination (well, duh) demyelinating disorder (wrong) and hemimegalencephaly (right). So you might just have an initial report from a not-very-confident technician and get more info from the consultant later.

There comes a ppoint when you stop I think. We've not had that with dd so much as her brain damage was seen at birth (she had her first MRI at a week old) and it clearly pointed to cerebral palsy. We just didn't know how severe it would be.
At 5 she has the physical ability of a newborn. Cognitvely she is fine but due to putamen and thalamic damage will have memory/specific learning diffculties and she has visual impairment. So she has some delays (you would do if you cant refine your knowledge of the wrold by asking questions)
It was the second MRI that pinpointed the exact brain damage.

Do you have a diagnosis at all? If there's nothing found I guess they will stick 'cerebral palsy' on your chld because that it a motor disorder.
'Unusual brain' is just such a weird thing to say. That could cover just about anything1

Thank you both of you. Yes it is a very vague expression and I just don't know what they mean by 'an unusual brain'. She had the standard genetics testing and it all came back ok, so whilst she was under for the MRI they took more bloods to test for more rare genetic disorders so we're waiting for those to come back.

Development wise she's doing pretty well in all areas except physically. She is now 2 and has the physical ability of an 8 month old. Cognitively she is spot on and all other areas are approx 4-6 months delayed. So I was quite surprised some sort of brain damage wasn't picked up because her physical ability isn't very good, she can't even roll or go from lying to sitting.

You havn't alarmed me, I'm sure there will be more tests to come, I just feel so bad for DD2 constantly being poked and prodded.

sorry yr results are so wooly

we had similar situation after dd's. Never got full report - it was summised by endocrinologist as 'showed some signs of developmental changes in keeing with her chromosomal abnormality' I spoke to them about this and was told that it wasn't as big or developed as it should be.

Few months later we got another report from metabolic team which drew upon the same scan and described 'several major brain abnormalities including leukodystrophy' Obviously was mortified - particularly when I googled leukodystropy

If I were you, I would ask for appt with neuro consultant and ask them to eplain

I reckon drs are generally cagey and vague about these issues due to threat of litigation

I KNOW my dd's brain is knackered as a result of medical probs / hypos / things that have happened during her life / some stuff that could have been prevented. The fact she has underlying chromo disorder made them somewhat lazy and complacent in getting to the bottom of it

Sorry have gone off on one a bit there. Hope I haven't alarmed you

what a vague expression! I'd expect them to describe the white matter development and connections and stuff. 'looks unusual' could be aby thing!
The neuro might have a fuller account and can shed light on it and I guess they might want to test for various genetic syndromes.
dd's MRI described in detail everything such as 'deterioration in the putamen with blah de blah'

We finally got our MRI results today (through the post which surprised me). "DD2 has a slightly unusual looking brain and has immaturity. This is common with children with developmental delay and doesn't tell us the underlying cause of her delay".

So that was it really, I tried to call and of course can't get hold of anyone to ask why her 'brain looks unusual' and what it means.

Has anyone else had this and been told what it means and why? Also, if a brain is immature does it eventually mature or will it always stay immature?

Probably very stupid questions, but it's just whizzing round my head and I can't speak to anyone who may know.

I'm off to babysit for a couple of hours but will check in later, thanks in advance anyone who may reply.