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Cerebral palsy

(19 Posts)
dancestomyowntune Fri 29-Apr-16 03:04:39

Hi everyone. My dd3 was born ten weeks early and did very well in neonatal, coming home at six weeks old and thriving. However, she has been developmentally delayed and the possibility of cp was first mentioned by peadiatric team in September, when she was 7 months old. She is now 15 months and has, yesterday, been seen by the senior consultant peadiatrician who seems to feel that it is cerebral palsy. At the moment they are relatively pleased that physio is helping her and she is progressing well, but feel she is developmentally delayed. She didn't sit unaided until ten months, roll over until 11 months, hold a rattle until six months, she crawled at 14 months and has just this week pulled to standing. When she crawls she often drags one leg under her, although she CAN crawl properly. She doesn't yet walk. She also only has one word, dada.

The Dr doesn't want to do a brain scan yet as he feels it isn't going to tell us anything new, and will require general anaesthetic, which obviously has its own risks. He wants to see her again in three months.

I'm clueless as to where to go from here. What am I meant to do? How can I help her? What's next? I'm dealing with so many emotions, I feel guilty that my body couldn't keep her safe for longer, that it's my fault. I'm also struggling with people who don't understand. Comments like "she seems fine to me" and "she's just a bit lazy, she'll get there eventually" aren't helping me. Even dh doesn't seem to understand how hard this is for me to cope with.

Sorry for the essay, thank you for reading.

Summerdaydreams1 Fri 29-Apr-16 13:49:50

My 4yr old dd has cp. she was 13 weeks premature and was always delayed in her motor skills, didn't sit until 15months, rolled at a similar age. She has only just started to crawl but has been walking with a frame for the last 6months. She was officially diagnosed at 3 following an mri.
CP varies so much between child to child.

The early days are so very tough as you come to terms with things. I find it so very very tough.
I rememember the comments 'she's just a bit lazy' or 'she will catch up they always do' so well. I used to smile sweetly but inside wanted to scream. People just don't know what to say and I think they think they are helping by saying such things so to make you feel better.

You will become an expert in your daughter, treat your dd as you are now, give her all the experiences you would regardless of whether she had cp or not. Plug away at the Physio and exercises - it really will pay off and sounds like she is doing so well for her age.
We try and incorporate it into fun every day activities like play, at the swings, soft play etc so it doesn't seem so much of a chore.

I wish my dd didn't have cp but I can honestly say it is nowhere near as bad as I had first feared.
There is an ongoing cp thread on here too - pop along there and say hi.
Happy to answer any questions you may have.

Summerdaydreams1 Fri 29-Apr-16 13:58:38

should read " I found it so very very tough" not find

mumsnit Sat 30-Apr-16 21:14:47

I also have a DD with CP and know how many questions and worries will be going through your mind now. The main thing at this stage is to be plugged into the key therapies - physio, OT and SLT. Agree you are the expert in your child so do ask for everything you think she might need. Great advice above about what you can do to help with her progress.

Comparison is the hardest part I found in the early days. I did stay away from baby groups and friends with kids of a similar age but I do hope you have some understanding friends you can talk to. There are groups organised by Scope in some areas too.

She sounds like she's doing really well She's actually on a similar trajectory to my DD who crawled at 15 months and walked at 20 months. She has ataxic CP but is fortunately very mild.

minipie Mon 02-May-16 22:47:09

My DD was 6 weeks early and has very very mild CP, actually she hit her milestones on time but always very wobbly iyswim.

As regards what you can do, the main thing at this age is the physio and keeping her as active as you can - so eg you could encourage pulling to stand by setting up boxes that are the right height for her to pull up on? If there is a physical activity she loves then do that (eg DD has always loved swimming). On the other hand she will get tired more easily than other children so bear that in mind. Your DD sounds like she is already doing very well physically so likely to be on the milder end of CP.

As regards what will happen - assuming same as for my DD - she will be referred to a neurodisability team and monitored regularly (maybe every few months, or once/twice a year) by that team. They will sort out physio, OT, salt if required. There may be a wait for some of these. They may recommend a treatment such as botox or equipment such as a walking frame, depending on how your dd is doing at the time.

It is so unhelpful when people deny there is an issue, I know what you mean. I think some people think they are being positive, others are just in denial.

By the way - one word at 15 mo is well within normal so try not to worry about that side of things.

dogdrifts Tue 03-May-16 02:07:53

dd2 sat at around 12mos, crawled at 15mos, got her first standing frame on her first birthday, first walking frame around 18mos. She got rid of her walker in yr r. She's 12 now, has an IQ of 142 (higher than her paed grin) and skis black runs (although her ski season is over for is year as she fell in a race warm up and broke her collarbone). She also plays the trombone (of sorts) and is on her debate team at school. She took an RAD ballet exam last year. Her speech is still a little dysarthric, but she can control it if she has to. Most of her teachers think she is heading for the Supreme Court, she thinks she's heading for the Paralympics...

Cp is so different for every kid. She was originally dx with spastic quad, but dx changed at 4 with follow up MRI to athetoid cp. we have had follow up since birth with physio, OT, SLT etc. She hasn't really had any therapy for a few years as she does enough sport to keep everything moving.

Community paed, and referrals for physio. Our consultant told us that the physio would be the most important person in her life for the first few years. He was right.

wooshed Wed 04-May-16 12:53:36

Hi - you've had some really great responses, so not going to add much. The point that CP is very different for each child is really important, it's such an unknown at this point. Of course, that uncertainty is really difficult to face.

Do you have good support? Sometimes partners do process things differently, and whilst it's good to discuss and try and see each other's outlooks, it can also be good to get some support from outside. Family? Someone mentioned local support groups etc.

dogdrifts Wed 04-May-16 16:09:11

Just to add to what wooshed said, I remember talking to another scbu mum at an sn group we attended (our dd's were actually born on the same day in the same hospital, so we were v familiar with each other's stories) and saying that I wished there was a crystal ball that would show us the girls at 5yo, so we could see where we were headed, and plan. Of course, at 5yo, there were a whole other set of unknowns, but it's important to recognize that desire to know and be kind to yourself - there really is no way to plan a specific trajectory with cp in a tiny. (We all try to do it though - we were told that it would be unlikely that dd2 would walk or talk, but ultimately she does both.) I also found it quite hard to understand that really, so little is known about the brain that there really are no definitives, even with a very clear idea of what brain damage exists. Brains are, well, boggling. Our early years therapists would categorically not recognize dd2 now.

The only thing I will say, is that brain plasticity is a very useful concept for parents of little ones with damage, and that the more you can do in the early years, the better chance of 're-wiring'. Lots of kids will also wait until you and the physio have given up them ever being able to <insert specific skill - crossing the midline, whatever> and will then be able to do it three months later... dd2 didn't smile until 6 months. It was a long wait.

But yes, mostly, be kind to yourself xx

triplespin Mon 06-Jun-16 19:05:08

Can I ask if any of you with CP babies have feeding difficulties?

My 5 month old is showing some signs but nothing too major as he is rolling, grabbing toys but head control is weak. What I am highly concerned about is his tongue thrust reflex which isn't showing any signs of disappearing. Any experience of this and did the reflex eventually disappear but just take longer in a CP baby?

wooshed Tue 07-Jun-16 10:10:55

Sorry if I'm reading that wrong triplespin, is there not currently a CP diagnosis? Have you had any support from SALT etc?

triplespin Tue 07-Jun-16 11:06:00

No support from SALT. No official CP diagnosis as we are still waiting for referrals. He has some red flags of limited head control and more importantly has not lost his Moro startle reflex.

I am more concerned on immediate feeding side of things and wonder if others have overcome them with right help. Am going to ask for GP referral to salt

Summerdaydreams1 Tue 07-Jun-16 21:29:26

Triple, my dd is now 4 with cp. I had completely forgotten about tongue thrust reflex (there were so many worries in the first few years) but reading your post reminded me that dd had this reflex for longer than was expected and made weaning to solids harder and slower but eventually it went ( I can't remember when exactly) but she eats all the food we do with no feeding issues and has done for a long while. Not too helpful but reassurance that there is every chance your lo just needs a bit more time which is often the case for a couple baby/child.
DD also had a retained antr reflex for a long long time but this too eventually integrated.

Best advice I was given was "those you shout the loudest get heard". Be a pain and badger whoever you need to to get referrals - SALT and Physio are a good start. Best of luck.
There is also a cp thread on here although it's a bit quiet at the mo - post any questions you may have.

Summerdaydreams1 Tue 07-Jun-16 21:30:58

*Couple - I mean CP - typo

triplespin Wed 08-Jun-16 10:07:15

Thank you that is reassuring that it is possible. I will also post on CP thread to see if anyone else remembers their experiences. How is your DD doing?

triplespin Wed 08-Jun-16 10:08:31

What kind of CP does she have? We still don't know which limbs are affected...

Summerdaydreams1 Wed 08-Jun-16 10:34:22

She is doing great - so much better than I feared. she has spastic diplegia cp (legs with some hand involvement)- when she was a baby I thought she would be a quad diagnosis as her hands and arms were very awkward but this has improved greatly and she has full function although difficult at times. Her mobility is moderately affected, she can now crawl and walks with a frame but not yet unaided and will need a wheelchair for most outdoor.activities. She starts mainstream school in September.
Happy to answer any questions as I know how the worrying the early days can be.

triplespin Wed 08-Jun-16 12:11:37

Wow it's brilliant she is starting MS school. Well done to her!

Can I ask what were her initial difficulties with her hands? Just trying to compare with my DS - as we are just in a waiting period at the moment.

Summerdaydreams1 Fri 10-Jun-16 09:52:23

Her fists were very tight and clenched and when she did open them her fingers, particularly her pointing finger was clawed and stiffer than Normal fingers, she did bat objects and Grab but it was very awkward, rather than fluid movements. I was obsessed with looking at other babies hands and comparing their movements.
Her legs were always more obvious stuff and she scrunched her toes constantly.
We did massage, massaging her hands open and turning them to the ceiling with palms up.
She now has full function but fine motor difficulties - eg threading beads, scissors etc.

mumsnit Mon 13-Jun-16 18:31:47

Had lost this thread! Triplespin you may have had answers about feeding experiences from another thread now but I remember it taking much longer than usual for DD to be weaned because of her tongue control. We didn't start weaning until after 6 mo because her head control was very weak until then.

DD has quad ataxic CP but is mild and she's fully mobile. Similar to Summerday's DD it's fine motor control she now has difficulty with. I can remember the obsession with looking at my friend's babies and comparing their hand control and movement for a good few years!

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