Parents of children with cerebral palsy - Help needed for my friend please...

[Dropdeadfred]

My lovely friend has just been told her 16 eek old beautiful baby girl is 99% certain to have CP of some kind. They know she does not appear to se at the moment and her neck seems locked round to one side all the time (she can't seem to turn it). She doesn't smile or make any sounds other than crying at the moment. She is a very clingy baby and wants breastfeeding 24/7.

They are going to St Georges with her tomorrow to discuss brain scans and a firm diagnosis.
Can anyone please tell me how to help her and what they can expect during and after diagnosis?

For what it's worth noone knows how this occurred, there was no problem at birth or before that thye know of, so this has been a bolt out of the blue.

bump

anyone please??

My daughter (now 3) has CP. From my experience babies with CP cry more and are more clingy (but still within normal range if you know what I mean. Some babies are just miserable) than average. I reckon its down to muscle spasms and tight muscles. The fact that she has her head to one side suggests she needs physio and is having tight muscle sapsm.
Firstly, the scan will show any areas of brain damage. The amount of damage is not an indication of how severe the CP is. Some have lots of damage and only mild symptoms, others tiny amounts but severe CP. The scan will just confirm the diagnosis of CP. Its then wait and see for how affected. My daughter has severe spastic quadraplegic CP and is as bad physiaclly as you can get.
The scan also can't tell you about cognitive/intellectual outcome. Thats also wait and see.
She should ask for physiotherapy, OT and portage immediately to help with posture, handling and muscle spasms.
I can't think of anything right now but if your friend wants to talk to someone I'll be more than willing. Right now she's probably in shock with that horrible dread feeling.

your poor friend. she must be going through. hell. my dd has cp. she is now 12 and doing well.
dd was clingy and a nightmre to feed(is she bottle fed or bf?)

Cortical Visual impairment is common with CP and its nothing to do with eyes, more a signal mess up in the brain. Visual therapy can really help with that.

My experience is of speech/communication problems rather than CP, but my twopennorth -

this will naturally be a scary time for them, thinking there may be a problem with their baby. I imagine there will be uncertainty as to prognosis even if they get a firm diagnosis of CP at this stage - there may be further blood tests/investigations nseeded. So I think the best thing to do is just listen, and show an interest in how they are all doing as a family, and what's happening medically wise.

If she has older chldren, maybe offer to help out looking after them whilst she's at hospital, or with shopping cooking.

Thanks everyone, yes she does have older children..but they are 11 and 13. Their dd1 is my dd2's best mate.

Thanks for the offer for her to talk to someone Needmorecoffee...do you have an email address i could forward to her?

if you don't wan tto put it up you could email me at [email protected]

Thanka everyone, they are devastated and fearing that she will have the worst possible symptoms and end up blind in a wheelchair...would anyone care to share some of their childrens disabilities so I couldtell her how you all cope?

sorry 2shoes she is breastfed...

Its [email protected]

The wheelchair is the first thing everyone thinks of but to be honest, not being able to walk isn't that big a deal if its comes to that. I use a wheelchair myself. My dd is in a wheelchair as her CP is very severe. The thing that is worse is having no hand function. She can't play or feed herself r even scratch an itch. My dd can't speak yet but she does indicate yes and no and is a bright as a button.
Taking her out and about isn't a big deal although she hates having to stop for road crossings and stuff as she's a little impatient. The hardest thing is entertainment because of her severe disabilities. She gets bored like any 3 yo would if you tied them up and blindfolded them so DH and I have to entertain her all day.
She loves going on endless walks, likes singing and dancing (although she's getting a bit heavy to whirl around the room). She's like any other little girl.
The first year is hard though. Coming to terms with something like CP will be tough for your friend and she will mourn for the 'perfect' baby she was expecting and she will find things like toddlers tough. You sound like a caring friend and thats vital. So many 'friends' bugger off when a diagnosis like CP is made because they say 'they can't cope'.
Its also going to be hard waiting to see how her daughter develops. Can she hold her head up yet? Is she reaching?

needmorecoffee...she can't lift her head or reach (probably as she can't see)..

she is very floppy and her neck is stiff..

I willpass on your email address and thank you very much...

if you want to email me on [email protected]. I can tell you about my dd.

Is this st georges in tooting? We have had all our scans etc done there but are not under their paeds, but their children's wards are very good. My 2.7 year old DS has cerebral palsy, he's not yet walking but the signs are good that he will do so at some stage (I'd like to say sooon but don't want to jinx it!) He was a very content baby but I think if your friends child is turning her head one way it could be that that is causing the discomfort. It can be a real shock coming to terms with it all but they should ask for physiotherapy, occupational therapy and portage, also ask about SALT provision if it is needed, they can help if there are any feeding issues.

thanks Hairy...yes it is st georges in tooting

Oh, and Disability Living Allowance. Your friend can get the care component of this plus Carers allowance from age 3 months.

my ds2 is 5 & has mild CP & Autism due to his premature birth.
At 16wks he had no head movement & we had to use rolled up flannels etc just to keep his head in a reasonable position. He was also a very floppy baby & totally silent. Infact he didn't really even cry & also had problems feeding etc.
He is mobile & just wears splints for extra support etc & just started at ms primary & exceeded all the medical expectations.

It must be a very scary time for your friend, I hope she is able to access all the support the family need & the scans can maybe give some answers.
max

Sounds like Torticollis(Wry Neck), was it a difficult delivery?

thanks everyone, i am passing on all this info. You're very kind to take the time to help

noname...no very quick, but my friend said it was the most painful oh er 3 labours and births even though she was the smallest of her babies...?

Agree with needmorecoffe re need for physio etc

Would like to add that, like needmorecoffee says, getting the benefit DLA is so important. If you can tell your friend to phone the council and ask for the Disability Living Allowance office, they will send them a form to fill in and then she may well be entitled to the DLA benefit, which is not means tested and is well worth it. I wish someone had told me about it before, I didn't receive DLA until my ds was 18 months old.

I think that supporting your friend by listening and helping practically with things to take the pressure off is a good way to help. When I first learned of my ds cp, if I had learned about older children with cp it would have been too frightening and overwhelming. Especially when he was a baby, grieving for the "perfect" baby Iwanted, and coming to terms with the child I actually had been given, was a slow process.

Wishing your friend lots of luck

Thank you twoisplenty. Can anyone tell me how much the benefits are equal to?

i remember holding SGK dd1 at around this age, and she couldnt hold her head up. we sort of knew she had CP (was a preemie) but wasnt dx. i had to really support her head as it would just flop.

her dd1 was slow at walking, wears glasses, but is a wonderfully funny likee girl.

there are varying degrees of CP, SGK two eldest both have CP, and both walk with the aid of splints. her DS uses a wheelchair at times, but not all the time.

does your friend have access to a PC? would she come onto mumsnet herself?

yes she does, I guess she could come on here and then I will have to watch my step..

did she want to call me DDF? I'm of to bed in about an hour but she might want to talk about what questions she wants to ask tomorrow. Mind you, we might have covered every angle onhere.

Hi did your daughter have ct scan