Its not CP! well, docs 99 per cent certain

[Sleepstarved]

Doctor at Great Ormond Street has said no evidence of CP, overturning dx given at local hosp back in Oct.
DD is now 1yo.
Have since seen local doc's boss and she agrees with GOSH and doesn't even see any need to do an MRI.
DD has gross motor delay but it doesn't look like there is anything else.
Feeling a bit odd about the whole thing.
V annoyed we were put through such desperate agony when the original dx was made, really relieved that she doesn't appear to have CP but still a bit that she has some delay.
I guess I was thinking it would all somehow be hunky dory once we had got rid of CP label (I never thought it fitted her) but that doesn't make any difference to how she is physically now.
I don't really know why I posted.
I probably need a kick up the bum and someone to say 'be grateful she's not brain damaged, there are plenty of people here with far worse problems'.
and

you don't need a kick up the bum, more like a large that lot sounds stressful. Do you/they have a plan of what to do next?

This is the last place you'd get a kick up the bum for worrying about your DD! Its a national pastime on these threads!

I hope you get some answers soon though, and its a fairly easy problem to solve. Mild CP is no big deal anyway, but at least knowing what the problem is gives you something to work with. Worry is a crippling, wasteful emotion.

PS I know parents of NT children worry too but chicken pox scars, fallen arches and dental decay just doesnt cut it here!

Have they said whether they are going to do any further testing at all?

If you fancy having a moan/worry/vent then I started this thread ages ago, when the process of looking for a diagnosis started (over a year ago). There are a few of us who are waiting and worrying, it is a horrible position to be in, but you are not alone.

Nooo we dont kick up the bum

Good that you got some good news :)

What to they propose now for the delay?

The doctors seem to think she might just be one of those floppy low tone babies who gets there in the end and is fine.
GOSH suggested some bloods but in a half hearted way to rule out stuff like hypothyroidism but she has no signs of that so local doctor said can do them if you want but no rush.
She is having physio, just been promoted to fortnightly from weekly and she is being assessed for portage but it is questionable whether she will qualify - which is obviously a good thing - because she needs to be delayed in two areas and so far its looking like its only gross motor.
Basically she is wobbly in her core but sat securely at 8mo and last month started getting from prone to sitting and back again.
She doesn't get onto her hands and knees but can commando crawl (last month). She stands really well, starting to cruise but needs a little help pulling up.
GOSH will see us when/if we have MRI and bloods and local doc boss will see us in four months. In the meantime she carries on with physio and portage if she gets it.
It is good news but it doesn't make any difference when all the other babies we see her age are walking around...
Feels a bit like no-man's land.

Giver her time she is only 12months. My eldest DD didnt start walking properly till she was nearly 2 and even then she had a funny gait which did right itself by the time she got to 3. She is 22 and I notice it if she trys to run say for the bus, but no one else would no the difference. She didnt have any physio or anything as it was years ago now and we lived in the sticks :) she would shuffle quite happily on her bum and was quicker than me walking sometimes when she wanted to do and escape

It sounds as though she is doing pretty well, ds didn't sit until 12 months and has only recently started taking some steps behind a walker at 21 months, he can't crawl as he can't seem to bear any weight on his arms. (dd1 and 2 didn't walk until 16 months and 21 months and are both nt) - not walking at a year is still well within normal range, and it is great that they haven't identified any other delays.

Has benign congenital hypotonia been mentioned at all? It is basically low muscle tone with no other symptoms presenting, that children grow out of.

Hazey - does your DS have CP? My DD doesn't seem to like to bear weight on her arms, she stays on her elbows.
BCH has not been mentioned but there is a lot of hypermobility on my side of the family, never caused much a problem though, and DD is a bit bendy so I guess if they are thinking anything is behind the delay it is probably that.
Doesn't explain the weak core though.

Some babies children do just have lower tone i.e. low in the normal range iyswim. We were told this when dd was having trouble sitting due to low tone in her core muscles. In her case, she does have a brain injury to explain things but her main 'symptom' is a weak core which affects everything else and has delayed her milestones. The main thing is the physio and strengthening and developing this area. If, as your MRI suggests it is benign low tone the likelihood is that she will eventually catch up with her peers

Sorry, meant your Doctor not MRI..

Ds has global developmental delay, hypotonia and feeding issues. We haven't got a diagnosis, but he has had an mri scan which was clear, as well as some blood tests to rule out some scary stuff. At the moment we are waiting to see a geneticist, as ds has mildly dysmorphic features and a few other genetic markers.

He also has a weak core, although this started to improve when he started sitting, and we were also told to use a standing frame for a while, which would help imrove his core strength.