Cerebral palsy diagnosis

[Mummy1234567890]

Anyone who has a child with cerebral palsy could you tell me about your child and abilities. My daughter was diagnosed yesterday, so just looking for some real life stories to read. Thanks x

Hello. We got on ok at physio, just given some exercises to do with on her legs really didn't do alot. She has started to crawl now though so shes doing well. We are seeing a private physio Thursday so hopefully that helps too. I understand what you mean it is very tough to deal with, I think I'm lucky as happily married but it puts pressure on any relationship but I try just to take each day as it comes. Hope you are ok xx

I'm really thinking of ending my relationship hun tbh, been doing it on my own from the start, I'm getting nothing from it, draining more then anything, my little girl doesn't even ask after him, he never support me through any of her needs or appointments etc , been really let down really by him ,never thought I'd be in this position

I think the fact your little girl doesn't ask for him says the most really. I take my little girl to all her appointments and my husband just comes to the more important ones, but I only work 2 days he works 5. You will make the right decision for you and your daughter. Hows old is she? Xx

Just wanted to say that the physio is very important. Many years ago (30? when she retired) my mother volunteered with a group of others to help a child with severe CP or some issue similar - he was floppy and could do very little, following some sort of exercise programme to build muscle, so they'd repeat movements like getting him to follow a sparkly ball with his eyes so he had to move just his neck as to begin with as he was very very floppy. All the exercises were fun with sparkly, crinkly type toys, sensory things he wanted to touch . I remember her telling me they were cheering him on crawling, and eventually (2 -3 years or so later?) he was in calipers for support and walking with a frame. Still non verbal though I think. So exercise is important to keep up, and making it fun to get progress. Will take a lot of hard work but I know my mum found it very rewarding honestly you'd have thought it was No 1 grandson the amount she chatted about him. So don't be afraid to ask family and friends for help it could be something they enjoy and get a lot out of.

2nd I have a friend my age with CP, it affects his legs so he cannot walk without crutches or a wheelchair, it affects his arm movements and can affect his speech when had a drink but not drunk more rapidly than others (tales of thrown out of pubs). My friend is very intelligent and nicely spoken so has had good jobs over the years (however it is evident the slightest hint of recession/cut backs and they seem to make him redundant first, so difficult to prove). He gets himself out and about has a far better social life then me - he knows everyone and everyone adores him. Quite simply he doesn't let his wonky legs get in his way, if he wants to do a parachute jump, he will.
So a lot is about personality and self belief - his dad always instilled that in him: anything is possible (lovely man, very wise, sadly died a few years ago)

Aww that's a lovely read. I will try to install the same beliefs in my daughter. I'm seeing a private physio this week as I totally agree it's so important. She absolutely loves crawling all over now so I encourage that and give her lots of opportunities to crawl. I feel alot better mentally now, we will give her best life we can and I'm sure she will have an amazing one as shes such a lovely little girl so happy. Xx

She is 6 hun

@user1499288566 at what age did your daughter learn to walk?

@Mummy1234567890 I'm going to look into private physio as well I think as DS is already 2 and physio is only monthly at the moment which I don't think is anywhere near enough. I'm also looking into hydrotherapy but the quotes I've had so far are very pricey.

I've just booked swimming lessons in a hydrotherapy pool, not started yet so will what they are like. The NHS physio is so limited, my little girl got upset with it all so that cut the session even shorter. Xx

@Mummy1234567890 oh amazing that's what I'm looking at. Is the lesson with a qualified physiotherapist or just a swimming teacher? I found the physio to be ridiculously expensive but have found a swimming teacher with a hydro pool for a lot cheaper! I'm sure it wouldn't matter either way?

Where are you located? We're in London so found it very expensive 🤦‍♀️

It's just a swimming teacher, probably not as good as qualified physio but certainly better than nothing. Oh I bet its expensive in London, we are in Hull paying £69 for 8 lessons so not too bad I don't think xx

My dd was diagnosed with hemp at 13 months. From birth her right side was obviously affected. Her arm was curled and her leg stiff. She sat at 15 months, walked at 2.5.

She’s very unusual though, she has nearly no noticeable difficulty at 6. She has a wonky run and looks a bit poor at sports, she doesn’t have the coordination for riding or scootering but she appears normal walking and doing day to day activities. Just a string left hander. She’s done amazingly well and more than I dreamed of.

I didn’t sent her to school, I focused massively on physical experiences and skills such as walking on logs or climbing in the park. I don’t know how she would have done otherwise. Horse riding, at first for the disabled but now a Saturday group, built her core strength

@Mummy1234567890 WOW! I was quoted £80 for just a one hour session! With just the swimming teacher though I've found one that is £25 per session, sounds like you've got a very reasonable price and I'm sure it will help loads.

@OhNotNowBernard Thanks for sharing, and so lovely to hear how amazing your daughter is doing! My son is 2 years 3 months so I am really hoping he will get there soon with the walking, he's such an active boy it's so difficult for him to burn off his energy. So far, we are similar in that he doesn't have any noticeable symptoms apart from not walking but he is still very young at the moment.

I was going to suggest swimming!

My ds has spasticity in all his limbs and slight contractures of his arms.
His is a gene variant though rather than actual CP.

Swimming has helped massively with keeping and improving his mobility and he now swims competitively.
Have a look at CP sport - it's a charity and they do development galas for swimming but they also do special access days to a whole range of sports and are great at getting children active.

Also don't be afraid of the idea of medication if the spasticity starts to cause pain later in life. My ds takes baclofen and it's been a game changer for him.

His ability to walk as far as peers is evident and he fatigues when on his legs easily (less so when swimming!). He also uses a muscle roller (manual and vibrating) to stretch/massage his muscles.

We also have gaiters and splints so ask for OT referral as well as physio and request a static passive stretching assessment for aids.

Follow this post my daughter has been diagnosed with diplegia cerebral palsy this week.

She 2 1/2 almost and hasn't really progressed from cursing at 18months. She occasionally stands unaided and attempt the odd step, but nothing to write home about.

We have had physio as they thought it was low muscle tone to start with but as she wasn't making a substantial progression neurology got involved and said CP but we have an 8 month waiting list for MRI scan

My LO was 10 weeks premature and had a tiny bleed when in hospital so they suspect it's from that she has CP.

I'm told she'll walk but how well we don't know. My child is of completely sound mind and is a little chatter box.

My son aged 2.5 has been sleeping in my bed since 10 months old and I am now struggling to get him to sleep alone. It's got so bad now that I have to lay with him for him to fall asleep and he quite often has to be cuddling me or touching my face etc. I have a 8 month old baby too so if I get up in the night to go and make the baby a bottle of milk, he wakes and will cry when I leave the room. He's also quite clingy during the day but that really depends on his mood! HELP I'm desperate for him to be in his own bed and own room so we can both get some space and a good rest!!!

Apologies this was supposed to be a new thread not sure how I ended up posting on here!