Advice needed for a friend re:process to diagnose Cerebral Palsy

[TotalChaos]

Hello ladies. Would appreciate advice on behalf of a friend.

Her eight month old baby is being referred to a paed, and CP has been mentioned. Her baby can if laid on front, lift their head but other than roll back to front the baby can't roll or sit up at all unaided. If propped on a cushion baby flops over. Also her
baby cannot weight bear on arms - ie pushing up, or legs at all. Arms, leg and trunk muscles are very, very weak.

Her baby did go through some birth trauma, and has been under physio six 6 weeks old.

My friend is naturally rather concerned, and wonders what is likely to happen next, and if they are likely to do an MRI scan to diagnose.

Many thanks

laumiere
I agree now ds2 is 6 & his lungs vastly improved i would like an MRI (actually one is on the cards for other reasons)

How old is your ds now?

thank you very much for all that info laumiere, will pass it on to my friend.

My LO is 28 months now, so has only been diagnosed for 10 months. I'm pregnant at the moment but once the baby is born we're pursuing a complaint against the PCT where he was born and originally seen as they missed the CP, it was only diagnosed when we moved areas!

Your original post sounds so much like my ds2.
I've just re re read it & noticed your sons age. DS2 at that age was not verailising at all, in fact when he started playschool at 3 he only said mum & then only when distressed.
He does still have communication difficulties but I think linked to his ASD rather than the CP. His speech is actually very good & understanding great!
Good luck with the baby & with the PCT.

Are you under Lewisham hospital now?

Yep, Lewisham Kaleidoscope Children's Centre for DS1 and have to say University Hospital Lewisham have been brilliant about the prem birth risks.

DS1 also has fab understanding (he also understands around 15 Makaton signs) but prefers non-verbal communication. He does jabber though.

My sister lives in Lee & has always said good things about Lewisham hospital.
Good understanding at an early age is a good sign.

We are in Suffolk & ds2 was refered at birth to physio etc as all baby's born below 30 wks or 1.5kg are automatically refered & followed up.
It does make it easier if you have not got to fight for someone to listen to your concerns.

From memory we got a diagnosis for dd1 at 12 months (9 months corrected) She was a 27 weeker, and she had a amssive brain haemorrhage, so we knew to expect some 'issues'. She was under a kilo at birth, in the NNU 3 months, and was followed up very well following her discharge 4 months after birth. Initially the diagnosis was CP hemiplegia, but this was changed to diplegia, although neither are truly correct. DD1's right hand and arm seem the only parts not affected - she has v little use of left hand and arm, and has obvious problems with leg mobility and coordination etc.
She had an MRI, not to diagnose the CP, but to ascertain how her brain had been affected by the haemorrhage. (And her MRI bears little resemblance to what she can do, ie she does much more than medical science says she should)
Hope this gives another picture, and good luck......

Sorry - in NNU 4 months, hit 3 by mistake.....the above doesn't make sense!

dd2 dx just before 2 - had been 'developmental delay' until that point
docs knew much earlier - birth trauma and 5 weeks scbu at term, but no-one mentioned cp until i asked outright for a dx.
she had an mri at birth (well, 12 days, she was too poorly before that), which we were told was 'inconclusive'. the one at 4 years, however, clearly showed the damage caused at birth. go figure.
to be fair, we had all therapy required from birth (and DLA from 6 months), so dx was never really an issue. it didn't change anything, it just made the paperwork and explaining easier.
if it helps (and obv all kids are different) dd2 was v similar to your friend's baby at 8 months, but went on to astound everyone. (i used to be romy7 - not sure if you have seen any of my posts) - but the bleak prognosis we were given has not materialised. she still needs support, but would agree with pheasantplucker about the random nature of MRI results. the new neuro who had interpreted the update MRI was shocked when dd2 walked in and had a conversation with her, for example... they are of utility, but can only be a guide as to prognosis ime...

DD had an MRI at 2days and then 2 weeks due to birth trauma. Both showed there was a hit to the central cortex.

My DD is almost 8 months she could lift her head until she got her PEG she has just started to lift it again, and she has rolled a few times back to side and front to back. She is responding well to physio can lift her head up and is holding it for longer in a sitting possition. Begining to gain good hip action over a roll can hold the crawl possition.

Getting good support form the community developement team is the best, all though DD has a spastic quad diagnosis, not one member of the team treat her like she has no hope, and she is responding to them.

We werent shown this(Riven interested in what you say about seeing it and being completely gone) The consultant that look after dd said that the MRI results can change over years due to the swelling after trauma. Is this bollocks?

my ds1's mri shows damage in 2 areas (i can't remember where) and professionals are still shocked when they see him as according to his MRI he shouldn't be walking, talking or be as able as he is.. he has spastic diplegia CP but GOSH have said that his isn't typical SD CP and they don't know how he will do as he grows as the damage isn't in the areas normally seen in children with SD CP.

dd2 was dx spastic quad at two, but muscle tone changed so much she was re-dx athetoid at 4 after the second MRI to fit the clinical presentation...
sgk - how old is ds1? they do sound similar lol...
the official line is that MRIs done 'too' early ie before day 5-7 after birth, may not be truly representative of lasting damage - this was the argument given to me against second MRI (dd's first was on day 12), but the second at 4 years showed the damage very clearly... riven, i wonder if they often say 'unclear' initially as they don't really want to discuss it with us? our team were very much of the 'it's a medical mystery, let's keep pumping O2 and pheno in and see what happens'

thanks very much for the extra info ladies.

madwoman - yes I do remember your posts as Romy - in particular your discussion about how although you had geared up for AAC/pecs etc, that your DD's language came on very well indeed.

so much so that she won't stop talking long enough to eat, now lol...
makaton was the best thing we ever did

i just have to find the volume control now as it appears to be stuck at 'max'...