mild Cerebral Palsy - need positive stories please

[Sleepstarved]

My DD, almost 8 months, has just been diagnosed with mild CP, probably as a result of birth trauma.
Doc says it is only affecting her upper body and arms (she holds her hands at shoulder height when tired ect).
Its been quite upsetting to hear the CP word and I am really frightened about what it will mean for her as she grows up.
Doc says she might need extra help writing, holding cutlery ect.
She has had a couple of sessions of physio and this will probably continue throughout her childhood now.
I hate the idea of her being 'in the system' and already marked out as different.

It isn't my ds but an old friend. He uses a wheelchair, at 16 he was the youngest person to be chosen to represent the UK in his chosen sport, he will be in the paraolympics next year.

He follows the local sports team avidly and travels to all games home and away, basically he has a fab life and has achieved lots already.

The world is your dc's oyster :)

lil man with spastic quad. was told dont expect him to do anything, when he was dx at 1yr. hes 5 - nearly 6 now and walks with a frame, crawls and sits in w position. he has autism and adhd aswell which impacts on his learning. has to use giant triangle grips for pencils, he could write if he found it relevent but his asd means he doesnt see a point in it and wont learn :/

Thank you everyone.
I am still pretty much in shock and just want to wish it all away at the moment. I can't stop crying.
Even posting on this board is hard for me to accept.
The more I see her next to other babies of the same age the more I can see there is something wrong, she is just not as robust as them or steady in her movements, but I am finding this dx really difficult to come to terms with.
And because the physio was surprised by it, I keep hoping its wrong.
I know its not half as bad as some families have to deal with but for me, its devastating.

I found it very difficult at first when I used to go out to baby/toddler activities and realise how different my DS was to other babies.I used to come home and cry-

I am so sorry you are in this situation. What really helped for me is when I went to a group for babies/toddlers with SN.Things improved so much for me then. Now DS is 8 and is doing so well.(and so am I)

It will take time to come to terms with this;there is no easy fix. ..but do keep posting.

OP - I really feel for you and must admit I'm quite surprised you have a CP dx at 8 months old. I had thought doctors took more of a 'wait and see' approach when symptoms were mild as it sounds they are in your dd. The reason I say that is because my dd was dx with CP when she was 9 months old - she has slightly fluctuating tone in her limbs due to brain injury at birth and low tone in her trunk. However a neonatologist later told us that he wouldn't support the dx and that they were moving away from dx when symptoms were very mild. My dd is now 4 and walks, talks and is just a little slower and slightly more unsteady on her feet than her peers. She has made consistent progress and I am amazed at what she can do! Please don't give up hope. Physio will really help her reach her potential and even though the early dx is surprising, you should now be offered everything she needs x

I had a CP diagnois at 8 months corrected, and the neonatologists said that they would have picked it up much sooner if it wasn't mild. I guess it depends on the neonatologists and what they are used to and what they are looking for.

I will however also say that after the intitial shock most of the time I don't worry too much about the CP. The early diagnosis has got us a lot of physio, and the physio is great. It's very difficult for us to see where we will get to with DS but he is just coming up to 17 months corrected age and is not really falling much further behind. Some days its hard but DS is bright, bubbly and apparently one of the most happy children people meet. He is certainly always smiling. It took months before I accepted that when other people told me he was georgeous, beautiful etc that they weren't just being nice and it wasn't something they said to everyone.

I was pretty devastated too mind, and I also had conversations with the physios who said that they weren't sure. They kept saying it for about another 4 or 5 months, but now we just don't ask anymore and don't think about whether they are right or not.

I hope that in our case its just DS legs, and there's nothing else, and I think I find that reassuring. I suppose that's because if its just movement/mobility and he wears splints I see that as similar to wearing glasses (mainly). I suppose what I am saying is that I accept the diagnosis, I don't like it, but I am getting on with it, and even after only 8 months I don't feel its the end of the world anymore. But early diagnosis is a good thing, so long as it doesn't limit what you try to achieve

sleepstarved I promise you it will get better, the initial CP dx is really hard to swallow, but the dust will settle and you will feel better.
DS was dx at 7 months, he was starved of oxygen at birth and had an MRI to confirm he had a brain injury. (which was suprisingly minor)
He recieved physio every 2 weeks from the moment he arrived home, which was a slog! but it was our physio who was hinting that there maybe something wrong, she told the neonatalist to tell us the dx of CP.

when it eventually sunk in, it was obvious that DS was behind in his movements. he was dx as Spastic Quad CP but his arms are more affected than his legs, and dispite the 'spastic' dx he is actually low tone with only his right arm which can remotely be describes as spastic!! but even then the has good range of movement in it, He's a bit of a puzzle to be honest!

But thats him 'on paper' in actual life he loves being on his feet and will do his own muscle strengthening in his legs, (squatting to stand, over and over!) he walks in his gait trainer and speech is coming along although a bit slower than we would have liked, but he is a very bright boy loves books (and turning the page before you finish reading) he can count on your fingers and (dispite some lazyness) his is determined to do things.
he's 3 now and making slow progress, but progress non the less, your DC will settle and you'll see the direction you need to go in.

My advice would be.

Don't think to much about the future, nobody knows what that will be like even the docs get it wrong anyway.

Enjoy what your child can do and celebrate every little mile stone.

Don't compare with other children, nobody is perfect.

If you have a can do attitude now your child will grow up with a can do attitude in the future.

Don't ever think what could have been, just what could be.

Enjoy having a baby. These are the years you look back on and wish you had been more relaxed and simply enjoyed.

These are the things some one should have said to me, instead I worried myself to death about what cp would do to my DD's future. Enjoy having a lovely baby you will cope with what ever her problems are because love really does get you through.

Note to self stop worrying about high school next year she will be fine (please god).

jack - we asked for second opinion at 4 as dd2's spastic quad dx was ridiculous (she is mostly low-toned with some athetosis), so we had a repeat mri and neuro consult, and she's now classed as athetoid.

it was getting bizarre. we used to move a lot and the referrals would all say 'spastic quad blah blah' and we'd turn up and the new team would just look baffled as to why little/ no spasticity was present at all.

sleepstarved. your reactions are perfectly normal, and will lessen over time. be nice to yourself and give yourself some space to be sad. we've all been there. and in a few years you'll be posting the achievements of your fantastic dd on here to a new and devastated sn mum. it takes time.

Thanks madwoman, I would ask for a 2nd opinion but out paed is useless!! We had a mdt with the neurologist, paed, orthopod and a few others about 18 months ago, when the neurologist examined him he said to the paed 'there is no spasticity in his upper limbs, and his feet/legs are higher tone because I'm messing with them' the paed avoided eye contact and looked rather sheepish!! but dispite that the dx hasn't changed.

oh, our paed refused to change the spastic quad dx, on the basis that four years earlier a consultant (woooooo) had made the dx (when dd2 presented completely differently).

that paed also wrote me alovely letter telling me about the three different types of cp - spastic, dystonic, and hemi.

we got a new paed.

i have kept the letter for posterity as it clearly demonstrates that 5 years in med school can mean feck all, really.

i also called scope.

PMSL!!!! spastic, dystonic and hemi !!!!!!!

They really must think that parents don't do any research into their childs condition, OK I may not be a doctor, but I have read papers, searched the internet and picked peoples brains to find out what my DS's issues are, believe me I know more about MY DS than any doctor!

Sorry for the hi-jack!!

it wasn't funny at the time. i was ten thousand feet and climbing

How is he