Just got Brain MRI results today for ds2

[Merlot]

Thanks for asking Milge

Results were a bit inconclusive really. Apparently ds has a little more fluid in the ventricles than you would normally expect - so this needs to be monitored just in case he needs a shunt.

Also, the white matter round the ventricle (shows up as a ring) was a little thinner than you would expect. What does this mean? I dont think they are really sure. Apparently it could account for ds's global delay, but might not. Now its on to the genetisist to see whether they can `spot' anything

bl**dy ! (sorry just got to get that out of my system!! - whole dx stuff really sucks and feel like my little man is some sort of specimen!)

Felt really low and cheesed off when we came out, probably due to the fact that we had just spent an hour and a half talking all about the things ds was NOT doing! Also, the fact that they can see some sort of physical "abnormalities" on the MRI just sort of hammers it home iykwim

HOWEVER, the paed did feel that ds had `come on' a lot since she saw him last and he is now cruising along the furniture, smiling as he goes and he is generally making his presence felt a little bit more which is lovely

I've just got to keep looking at my little man to remind myself he's still the same little person, regardless of what they are saying about him.

oh merlot {{{{}}}} Hopefully genetics will be able to tell you more. FWIW i have never had a bad experience with genetics, even though it is all very worrying. Kwym about being shoved from one dept to the next as my daughter is 5 now and we keep being reffered from one person to the next and still no definate answers apart from the fact they have finally agreed her hypotonia is definately worse on the one side to the other which I have always thought. I am hoping dd's mri will be concrete to a diagnosis tbh but who knows?

and fwiw I have found the emotional torture connected with appointments has got alot easier as she has got older. I used to at one stage have panic attacks before appointments but I was seeing one vile development paed with her at the time, infact he said she wouldnt walk (didnt know about the sitting/walking thing!) and she actually walked 2 months after So i know how you all feel {{{}}}

btw Dingle, if there is anything I can do, let me know. If you want to meet up for a quick coffee and chat you know where I am {{{{}}}

Reassuring to hear that appointments get easier as time goes on . For me, I think its a case of being able to somewhat bury my head in the sand in between appointments (concentrating on ds2 as my son and an individual and all that), but when we go to the hospital he ends up being transformed into a list of symptoms and shortcomings iykwim .

Feeling more upbeat today - ds2 is currently emptying my washing basket all over the place, very normal toddlerish behaviour

Oh sorry to hear this - these procedures always seem to focus on the negative and as you say what your child can't do but necessary unfortunately. Hope the genetisist can shed some more light.

Merlot - thoughts are with you, and i have to admit that this is all new to me and i dont really understand much about what you are all going through. I am at the start of all this so it may all become clearer to me soon.
Ds is "really behind" in his development but that is all the peads will say right now until we get the mri results! Ds now 15 weeks - not smiling, not cooing, not following with eyes, but he does have a good set of lungs!!!!
Keep your chin up
x

Thanks for you kind thoughts guys - hope your mri goes well jbadgirl.