Support/Information sharing thread for parents of children with CP - part 3

[itsnothingoriginal]

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

Does anyone have any experience of Lycra body suits? NHS are referring us for a fitting as Physio feels it may help strengthen dd core??

Also a proud mummy moment, dd was not settling for bed tonight, calling out - I went in to find her STANDING UP in her cot. OMG she has NEVER done anything but lay on her back or side in her cot. , whether or not she did it using the correct pattern I don't know,but wow, I never thought I would see her standing in her cot!

My ds had these over his Afos, bought from the high street

www.startriteshoes.com/shangri-la-red-girls-zip-up-canvas?gclid=COXIkKH3378CFWT4wgoda3gAzAx

He loves them, but they have a zip up the side which makes them easier to go over the Afos.

We also have tom car twisters these which are expensive, but well worth it

On Lycra suits, physio love them, parents less so. Personally I hated it, it did nothing for ds, and made him hot, but I am biased so others may be more positive. We have now given up twice and don't think the benefit outweighs the cost to us as a family.

summer that is brilliant!!! [Grin]

Wow Wow! Summerdaydreams

Cant wait until my daughter does that!!

Summer that's amazing what an achievement xxx
My dd took her 1st unaided steps last night. We popped the champers :-) bit concerned about her right foot this morning she won't walk much and when she stood at the washing machine it looked really caved in. Is that just muscle tiredness??? I've given her some ibuprofen she's also quite tired. Does this sound familiar to anyone when their little ones have had a leap in ability ??

We had a visit to the house yesterday from Occupational therapy. Don't get me wrong she was very helpful but it was just another painful reminder that my dd does have special needs and is not just a slow developer.

We are getting a potty chair for toilet training and stair rails. Also looking in to getting a grant towards getting a downstairs toilet. Again we had to push for a referral to see OT as no one suggested it to us. Her paediatrician seems pleasant enough but doesn't seem to do much for her.

Also yesterday my dd because of her walking and balance fell at the nursery injuring herself which resulted in a trip to casualty. I thought by this stage at nearly three she would have made more progress than she has. I just feel so sorry for her that she was trying really hard to walk and she falls and injures herself. I just worry that this is our future. Not one that I wanted or expected. Meanwhile her twin is flying and has no issues at all despite being the smaller and sicker of the two. Life is just so unfair sometimes..

Bedsheets and Summerday - that's fantastic news! What brilliant achievements

Albaba - I can remember being worried sick about DD and her constant accidents for ages after she started walking. Being honest she still has a lot of bruises at any one time but has got much better with time and practice. Progress can seem slow and even non existent sometimes but she will build on her skills x

Well done to summer & bedsheets little ones. It's fab when they do something new.

Summer has she done it again?

Bedsheets my dd 16mo walked quite quickly at around 11mo but the more she has been walking the more we have noticed how different it is. Her walking seems to be getting worse lately and has even resorted back to her 1 handed bum shuffle at times. We think she is having a growth spurt so her leg is getting tired quicker.

Mel ddhas not done much wailing since Monday night . I'm not sure if it was just a fluke or it's she's found it hurts or she's just not confident enough. We havnt yet got the vocabulary yet to know what's going on from her. She's done little bits so still positive but Monday evening I swear she nearly ran a half marathon x

Does she stand well. I ask because when all 4 of my dds were standing. I would sit on the floor with open legs, stand them infront of me and tell them to come to me, moving them further the more confident they got.
I also had confidence knowing I could catch her when she fell.

This took much longer with dd4, she has a weak core and falls over a lot. She also seems to have little perception of how close/far something is from her, so flinches then falls

No she doesnt she can balance maybe 5-7 seconds before wobbling then having to steady herself on something. 2 weeks ago we wasnt at this stage so shes getting stronger. going to transfer the footage of her walking on to a disk so we can play it on the tv to remind her of what she'd done. She knee walks and gets around just fine she is very quick!!!!
i think she might feel this whole walking buisness is just an nuisance .

My DD was wobbly like this too because of a weak core. Took her ages (as in 6 months or so) to feel confident about setting out into a wide open space without support around her to grab onto.

DD couldn't walk on her knees though - still can't really! That must be really good for building up core strength.

We also find growth spurts really affect DD as the centre of gravity changes again. Physio said this is to expected into adolescence but it will become a bit easier for them to manage as they get stronger.

Must admit I did question the physio saying we need to build up core strength . She clearly has a strong core it's lower leg and foot. We have a new physio as of September be good to see if we can get some more info x

Ok dd has nailed waking in straight lines. Right foot is clumpy. She needs to stop against something solid to turn round and face the other way and go again. At the moment we do stretches with the feet back and forth to try to keep it seizing up but does anyone know of any excersies I can do that rotate the ankle to help her turn on the foot. She also can't just stop mid walk and stand still. Not seeing new physio for another 5 weeks.

Albaba, I really get you and all you say. I can't say anything to make you feel better or worry less, wish i could but I hope knowing you are not alone might be of some help.

We have just returned from holiday. We went to the same place as last year and so could directly compare dd's progress (itms) and we could SO see the progress, able to sit on the beach, sit on the side of the pool and dip feet in and even paddle with me holding her arms (albeit her legs often crossed) but despite this amazing progress, I felt at times incredibly sad as I watched other families with DC similar age to my dd1 and dd2. Their lives looking so so much easier than mine feels.

DD2 should have been wandering around, playing with her big sister, moving from one activity to the next independently. But instead she NEEDED me to do everything, to be at her side. And I often found myself wishing this wasn't the card we had been dealt in life and wondering if ever, I would be able to sit and watch my two girls play, run off to make sand castles and me, relax a little and just watch....
I felt sad for my eldest dd too, is she missing out,
God, I hate this cp at the moment......

It's very hard, I realised today that if I don't meet friends on outings out my eldest would just have a crap time.
Farm trip today. Play areas , splash zone , animals. Thank god I'd sent a message out to my friends to join us as I hardly got to see my son as I was ferrying dd around the place.
Why do so many places insist on chucking that wood chip down????
It's starting to really piss me off. Dd knee walks so it just causes her discomfort.
Dd is so she didn't get to go into the splash area because I hadn't thought to bring any spare clothes for myself (stupid) her seeing her brother just annoyed her.
I also feel like screaming "this isn't what we ordered"
I seem to forget the disability and stay in my comfort zones , I bought a big paddling pool and host many play dates at my house. Then we go out and it hits me like a high speed train how little she can manage.
It's not been the fun day I'd anticipated. Xx

SUMMER. Thanks for replying. I can identify 100% with what you are saying. Most people in real life only see a snapshot and don't realise how difficult things are and the challenges we face on a day to day basis.

As in your case I feel that my dd has made a lot of progress. At the start before we knew what was wrong she couldn't sit unaided and if we left her in one spot in her cot at night she was in the same spot in the morning. She has progressed learning to sit, proper four point crawl, walk round furniture etc but it has taken a lot of time and effort. We have a family planner in our kitchen and the amount of appointments we run to is unbelievable. There is physio every week which we have been going to for the last 1 1/2 years. Along with orthoptics, orthotics, occupational therapy, paediatric doctors, child development clinics etc!! This is as well as all the additional work we put in at home. If we counted up how many hours we have spent in physio it must add up to hundreds!! I thought when we first started it would be a miracle cure. I didn't think we still would be going 1 1/2 years later!

My dd is now nearly three. She can walk. She has piedro boots and afos. I just worry now that she is nearly three and although she can walk it would only be for short distances. My dd is a twin and we have a double pram which her sister "Miss Independent" is now refusing to use and wants to walk everywhere. So we have had to buy a single pram with a buggy board. It's so hard with them being twins and being at different stages of development and having different needs. I feel just like you do that she should be running around with her sister and joining in with things. I also get real stabs of jealously when I see ones who are the same age as them running and playing effortlessly when everything is a struggle for my dd.

I also get what you say about your dd needing you. With my dd simple things like I have to hold her hand using the stairs or she would fall. I couldn't go to a shop and have her wander around with me or even at soft play she loves the slide but needs help getting up to it. Where with my other dd I am more relaxed as I know she doesn't need me standing by her side all the time. I too would like to be able to sit back and relax a bit more.I can with one twin but the other I am always watching her thinking "does she need help" and watching out that she doesn't fall. She needs so much more help and support than her sister. I think sometimes she gets frustrated too that she wants to do things but can't and lashes out at her sister but that is a whole different thread!

Sorry this has turned out to be a bit of an essay but sometimes it is good to get things of your chest!

It is good to get it off your chest, everyone here can relate. Hope you both Albaba and bedsheets are having better days.

I find myself swinging between two mindsets. I go through periods of feeling okay about things and thinking that although its crap, it isn't the end of the world and could always be worse to feeling completely overwhelmed, very negative and feeling like I could burst into tears at any moment. I am in this latter mindset at the moment . It just seems never ending doesnt it?

I see my friends with their children a similar age and although they too have their challenges, I know its not a bed of roses, but I see their children gaining more and more independence and I just want that. I don't want to always be sat on the floor, climbing on the slides and climbing frames because dd can't manage it on her own. I want to sometimes, be able to sit back, watch and having a natter. God when its written down I feel like such a bitch.

I think also, what makes it harder and as you describe Albaba and bedsheets, is that dd is desperate to join in and do all she sees other children doing it. She doesn't want to sit and watch.

I am sad that there isn't a quick fix and I am tearful that I may be pushing round a buggy forever.

Do you do any alternative therapies with dd? We have for the last three months been doing MAES Therapy, and have seen a noticeable difference with dd, although again it is very slooooow!

On a positive note, we had our fitting for our Lycra vest yesterday and it should be ready beginning of September. I don't want to pin all my hopes on it, but I am keeping everything crossed that dd will take to it and it will have a positive impact.

Hi All, I haven't posted on here for ages (if ever?) but just reading the recent posts and seeing how some of you are finding it hard dealing with the differences as you children and their peers grow bring sback memories from when DS2 was a similar age. It does get better, your children sound as if they are doing great, may be progressing at a different rate to others but they are making progress.
DS2 is 11 now and accepting and coping with the difference does get easier but it is hard to deal with at times.
For a while I avoided activities where others were running around when ds2 just couldn't.
We did things like swimming and horseriding where the differences were less obvious.
DS2 has autism and CP, but has come a long way from that silent, immobile two year old that we worried about so much

Hi summer. My ds is 4 and does not walk independently. However I just wanted to say that within the last few months I have left him at soft play with his friends while talking to others, and found him on the higher levels. I can also leave him in swimming pools so long as he has some kind of float. The other thing we do is trike rather than push a buggy as he prefers it.

I suppose i am just saying it may be easier in less time than you think.

Hi everyone, how are you all?

We are just back from hospital after getting dds wrist splints made. We have came away with her night splint & her day one will be sent once it has been sewn together. We are hopeful they will open her hand out & maybe dd will start showing an interest in her R hand.

everyday both of my dds look different to yours. I have tried the night one on for a while and she doesn't seem to mind it.its hard plastic on palm with Velcro straps to keep it on. The day one is soft material that just goes around her thumb & wrist. We have to Introduce it to her gradually for longer each night. Does this sound the same as you? Or is yours a day splint? Really hopeful it works :)

Sorry everyday just looked at the pic u posted up thread & her day one IS the same :) sorry should have double checked :)

Hi Melmo ;) We were asked to try it to see if DD would tolerate it. Our (lovely and supportive) OT was convinced that DD would not tolerate it as that was her experience with so many kids, and therefore it would not be worn. It's hit and miss whether DD has it on; I need to get a grip really and encourage it a bit more - your post is the kick up the bum reminder I needed lol :) thank you. We have no night splint.

We've just gone and got handrails, support bars, half-step etc for the staircase, bathroom and front door. DD is so excited and prides herself on 'do myself' . She still needs help, but her 'handlebars' are brilliantly facilitating her independence. (DD has just turned 3).

Having all the bars and rails affixed is another reminder though that we have a disabled child. Today was a mum-tears day. It's quite hard seeing them in place this weekend, but made easier seeing DD grinning at them as they are 'her helpers'. Oh and I've finally got a radar key which will make our lives much easier when out and about.

Sending out an un-Mumsnetty hug to others having a tough time too .