Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

[everydayaschoolday]

Another FB message, this time from the charity, Cerebra (the sledge innovators)

This evening at 9pm Professor Richard Hastings, our academic chair from the University of Warwick, will be taking part in a live webchat with Mumsnet. Click the link for more. www.mumsnet.com/Talk/special_needs/a2021991-Live-webchat-with-Professor-Richard-Hastings-MONDAY-MARCH-17-9pm

[Holidaybound]

Sorry, I lurk on here more than contribute, but it has been lovely hearing the progress many are making. Am I right thinking it is mostly those with a diplegia diagnosis that are beginning to walk around 2-3yrs? Does anyone know of quads who are walking, and if any of the older children have eventually learnt to walk (with or without aids) if they weren't cruising/standing unsupported by 4 years? I've heard that the NHS assumes that if a child isn't walking by about 8 then they probably won't improve significantly. Although ds is only just 4 I'm beginning to get a little nervous about how incredibly slow progress is.

Everyday - I hope the swimming improves again. We always do better in warmer pools, but other than a couple of blocks of hydrotherapy always just go for a splash rather than lessons.

[itsnothingoriginal]

I have a mobile child who is quad (CP is mild in all limbs though). amymouse it's hard to gage sometimes when they are genuinely tired and when 'acting up' a bit at that age! I did a lot of carrying when DD was 3-4 yrs but can't physically manage her now she's nearly 7. It gets a bit easier when you can reason with them - bribery pays off sometimes!

My DD is still petrified of swimming. We've had 1-1 lessons but made very little progress. It's wonderful that so many of your lo's get so much out of swimming - maybe one day we'll have a breakthrough!

Might try watching OBEM tonight then - have never been able to watch it before as still feel very about DD's birth..

[Summerdaydreams]

I used to love the one born evry minute but since having dd have, like you itsnothing, Not been able to bring myself to watch it. I've recorded it and so might dip into it if I get brave.

[Sneezecakesmum]

Also never watched OBEM. Just feel cheated that DGS didn't come out unscathed when it seems some women deliver healthy babies despite smoking, drinking etc. (Bitter and twisted? Moi? )

DGS is affected in all 4 limbs but is athetoid/dystonic/dyskinetic or something! He walked in a rifton gait trainer when he was 2 and now has a kidwalk at 5. He is GMFS 4 so at the higher end of disability. He needs (always will I think) full support but can walk.

Went riding with the RDA today with the new pony who this week didnt nip anyone or attempt to kick DD while she was doing the supporting of DGS He is growing on us as DGS sat really well.

[everydayaschoolday]

Waves to Holiday :) Yeah, holding out on the swimming improving. We'll see, if not we're going back to the splash about instead of lessons.

Also, I think DD is quad as she is affected in all 4 limbs, but it's mild with her. Her right side is worse though than her left, and her difficulties are high tone in arms and legs. The Paed called in Asymmetric Bilateral Spastic CP (asymmetric bilateral meaning unequal but both sides, apparently). I'm doing some carrying at age nearly 3, but as long as she's not tried, she's quite self-motivated to walk. Yeah, I'm not carrying DD2 when she's 7 either, itsnothingoriginal lol :)

amymouse I notice that DD2 gets tired quickly in the afternoon if she's been on her feet most of the morning. Recently, with the new development of the word 'up', she's asking to be carried. I think some of it is for the cuddle-effect, so after a quick 'up' and cuddle, I try to put her down again to see if she's really tired. Today she went back down and toddled along quite happily, but other days she objects and wants straight back up. When she wants up, for me it's either for a cuddle or she's tired.

I distinguish between CP-tired and general tiredness on the grumpiness monitor! So grumpy, whiney child needs a nap (general tiredness), but just an 'up' child is physically tired out (unless just seeking a cuddle from mum). But I expect all our little people are different, this is just what it seems to be like for this one!

[everydayaschoolday]

Holiday I think there's such a long journey and masses of potential ahead of you yet with your DS just turning 4. Try to take strength that he's making progress, however slow. I make that sound so easy, but we all know on here how difficult that really is.

The worst part for me during some of the 'slow-progress' periods, is that neither the physio, paed nor any of the other professionals could give any assurance or prediction of how far DD2 might develop. That was/is very frustrating.

Sending you a big unmumsnetty hug x

[everydayaschoolday]

In reply to lots of others, that's the first time I've been able to watch OBEM since DD2's birth. I was actually (surprisingly) alright with it. But I also think I'm going through a good patch at the moment with development and health/education piece coming together. So I'm in a good place right now.

I get that we're all at different stages of this difficult journey and I can completely understand why many would not feel comfortable watching x

[Everysilverlining]

Hi. I think a lot of the predictions for children can be out. We have a great physio who basically discounts most of GMFCS for children who are 2/3 (which is where DS comes out usually) as the results are not based on up to date research methods, nor do they take full account f the interventions. She is also of the view that the better the pattern the less it matters when. She is however eastern european and that influences her opinions, I wassceptical at first but she really does know what she is talking about.

DS is just 4 and has been able to cruise for 2 years plus but in his case he has no incentive. He crawls very fast, he can get up and down from standing (he can stand independently but not in his current splints which are better for walking) he can walk with tripods and different walkers. he just can't be bothered. I do believe he will get there though, but without a lightbulb moment.

I also believe that the definition is a bit odd with diplegia, quad, bilateral etc. Ds is diplegic, BUT his core is affecetd, his right arm is weak and his balance is off overall. GOSH said he was also disarthic but the SLT don't agree. I think that's what I have slowly learnt, not agreeing is part of the picture.

And on the tiredness DS does CP tired, but mainly he just does tired.... He has never complained about wlakign etc but when he is CP tired he usually says he has either run out of fuel, or run out of petrol!

[Holidaybound]

Thanks all, it's reassuring to hear of other quads doing well as the Internet tends to be so pessimistic about their progress. I'm not really sure how severe DS is. I think the spasticity is relatively mild, but his ability to move his legs and even his awareness that they belong to him is poor. One neurologist muttered she thought it was dyskinetic(?), but his physio disagrees. So fairly standard confusion over diagnosis. We tried a rifton walker for ages, but DS had no idea at all how to get any power through his legs to move it, so eventually refused it completely. Bribery completely fails with him. The kidwalk looks nice with that big wheel.
It's interesting to hear little sneezecake is doing RDA. We've just started horse ridding (not RDA). I'm very pleased with it as a sneaky physio session - he grins throughout and doesn't have a clue it's exercise! Reading around hippotherapy I've heard about the benefits of feeling the warmth of the horse as a type of massage. On the standard walks we do DS uses a saddle that wouldn't let any heat through. Does RDA use thinner/no saddle?
Thanks for the unmumsnetty hug everyday -I needed that! xx

[Beagle79]

I just came across this thread and wanted to say hi. I'm not sure I in the right place but I'm sure you will let me know if not!

I had twin born at 25 weeks (now 18 months, 15 corrected) My ds, although delayed, is doing well. My dd however is suspected of having cp. we haven't had the official "diagnosis" but the docs and physio seem pretty certain. She has low tone, head control is ok, but not great and currently poor trunk and she struggles with using her arms/hands.

I feel so sad for my dd when I see her watching her brother crawl around playing with his toys and she is unable to join in. I just get so down about it all. I know I have to happy and strong for both my children, but it's really difficult. Has anyone sought counselling to help with their feelings?

[Sneezecakesmum]

RDA vary in what the child needs. DGS was tried first with 2 different types of saddle and did the dyskinetic thing of legs going rigid because of the hardness which he found uncomfortable so he now sits on a sheepskin with DD on one side and a helper on the other. He also has a handling belt as his movements are unpredictable. He loves riding and it's so good for his weak core.

Beagle. My DD had counselling after DGSs traumatic birth and it really helped. So difficult for you to see one twin doing so much and your daughter struggling. Everyone (no exceptions ) here will relate the sadness they get seeing NT children of the same age doing so much with ease, but it can be avoided to some extent. DD now has DGS 2 who was walking at 10 months and does more now than his brother does at 5

Make sure you have the right seating and equipment for DD so that she can use her hands better. Any individual queries you have just ask, there is a mine of information here

[Holidaybound]

Thanks for the riding info sneezecakesmum. The place we are doing riding seems quite flexible, but has no real experience with using it as a therapy so it's useful to get some ideas. Once we've got DS used to it a bit more we might see if they'd let him try a softer saddle. Also our physio has hinted she might be able to do a physio session meeting us there, which would either be great, or put him off completely!

I hope you find the thread useful beagle. I've found it very reassuring and got endless ideas for trying new ways to help DS. I didn't get counselling following DS disastrous birth, but it probably would have helped! I'd agree that one of the most important early things was getting good seating. Also we found vibrating toys were really helpful to increase awareness of hands.

[Beagle79]

Thanks .. With regards to seating ... At the moment we have a tumble form and a corner seat ... Should I be asking for anything else?

[goneHaywire]

Thanks Sneezecake

over the past few days I've been getting her more strenuous and energetic activities during the day. Then quiet hand eye coordination play (apparently this helps produce melatonin) in the hour before bed. At bedtime instead of carrying her to the bathroom & bedroom I get her to step (with support). so far she's slept the last 2 nights

[everydayaschoolday]

Hi Beagle and welcome to the thread xx

We had a Jenxx corner seat to start with too. Did they give you the matching table to go with it? Working at the table (puzzles, finger foods etc) really helps with fine motor skills, while the child sits with the correct posture.

DD2 is about to start nursery in a Primary school setting in september. We see her future classmates in the playground everyday when we do the school run for her older sister. I'm smiling and nodding to the other parents, but I was really swallowing back tears last week when her little pal ran off and DD2 couldn't follow.

I didn't have counselling, but I think I should have. It would have made life somewhat easier in the early days when I was racked with guilt and sadness. I suspect (know) I was also depressed. I wish I had taken the offer of a counselling referral from my GP - I was in denial even sat in her office in tears. She could see (and was lovely) what I was refusing to see or accept about how I was feeling. I'm (mostly) fine now, but it's taken some time.

[Sneezecakesmum]

I personally hate the tumbleform chair except for feeding and then only if the child needs feeding. It tends to get left in the reclined position which makes useful hand movement near impossible. Try it and see! Always try to get it as upright as possible so the eye gaze is level. Probably ok with a less involved child but there are better chairs. A floor sitter is better (not for us because of the extending!) especially with a good low table.

Going upstairs is brilliant. It might help for DD to put her hands on the stair in front of her so she has more stability. Also teaches them weight shifting (so so important) Better on your back too! It also centralises them too which is always better to begin with. Try to alternate the leading leg and eventually to walk down a few steps too. Surprisingly this is a totally different skill and cp children often don't transfer skills but need each one teaching individually.

[Summerdaydreams]

Hello beagle, I really hope you find support on this thread. I know I have. I had counselling, i got 6 free sessions from BLISS. I was very depressed. Tried for so long to try and shrug it off, but I couldn't. The counselling really helped but so too did my wonderful GP and some AD's. I haven't looked back. I still have bad wobbly days but on the whole things are good.
We have a jenx corner seat. We didn't get a little table with ours but found one online at The Futon Comany which is perfect for encouraging playing with hands. We also have a bath seat.

[Beagle79]

Hi. I appreciate the replies!

I think I have been in denial about her issues ... It wasn't until last week when I took her for a supportive pram assessment that it all became real I guess. They tried her in a bug and I just cried! I think I thought she would just progress more quickly than she has.

Yeah. I tend not to use the tumble form as much now as the pt says the corner seat is better for her. We did get a table with it, though I'm not sure what real use it is right now as she cant really use her arms. I do use it and put toys on it, sometimes she tries to swipe them. I have ordered some vibrate toys ... I googled the wrong thing and it came up with some rude ones! Lol

The pt is looking to get her a stander too very soon, I guess that's good.

Summer day dreams, which batch seat have you got? I am currently using our M&p baby bath which has a support but she is growing out of it, plus I'd like to bath both twins at the same time.

If there are any more suggestions, I'd love to hear them. Thank you x

[Galena]

Hello all. I lost this thread a while ago. I'm afraid I can't read it all to catch up so I will try to leap in where you are all at and give you some progress on DD.

So... DD has had her SDR. She is now 5 months post op and doing incredibly well. She is back to her pre-op function, however she generally walks with a heelstrike now instead of on her toes and her left leg no longer turns in. She also gets FARFARFAR less tired doing everyday things - and has PILED on weight since the op which we are now trying to help her lose because we hadn't realised quite how much she'd put on. It's all due to using less energy to do everyday things.

This is her doing some muscle strengthening (there are more videos on there too).

And this is her, having walked 0.65 miles home from school - something we couldn't have considered pre-op.

She's fantastic - though I may be biased!

[everydayaschoolday]

Hi galena! Great to see you again. Thank you so much for this thread - like for many others here, it's really helped me in so many ways xx thank you.

The footage is superb. Well done to your dd! She really is a star :) glad it's all gone so well post op. She looks fabulous x

[Summerdaydreams]

We have a corner bath seat: here
www.smirthwaite.co.uk/bath-corner-chair.

We got it through our OT. It is perfect it means little summer can share her bath time with her big sister! And makes life easier for me too ! Would defo get onto your OT for one.

The realisation that your child is more behind than you thought is always hard. I think it's healthy to cry and let it out. Most parents here has been in denial at some point or another and to varying degrees. I know I have and probably still am to a certain degree, I hate the thought of my daughter being classed as disabled, because in our eyes she isnt, she is our little summer who is going at her own pace.

Galena wow those videos are brilliant. I can see why You are so so proud and over the moon. An inspiration. If my dd is able to do that one day, I will be on top of the world.

[amymouse]

Wow Galena, how well is your DD doing! I take it SDR was worth it?! Really interesting she gets less tired. Must read up on it again.

Beagle I also had counselling (DD was also prem and had a traumatic birth) and it REALLY helped. I also took antidepressants alongside it until I felt less anxious/more able to cope. I still have wobbles, but am in a much better place. When we finally got the diagnosis at 2 I felt hit like a ton of bricks, even though I pretty much knew it was coming.

We have just had an appointment through for an assessment from Wheelchair Services. Really really mixed feelings; on one hand I am glad that help is available but on another I suppose it is yet another reminder that nothing is going away! It really doesn't help when well meaning friends and family say "what is the point; she can walk now"-and forget that she tires so quickly and her walking can be very inconsistent.. Some days she wobbles along and others can't do more than a few steps independantly We've had one of the those weeks, where DD needed far more support than normal walking so it is good timing really especially as our Phil & Teds is looking more knackered by the day!

[Eyelet]

Hi - I've been pointed over here after starting a thread, our dd has CP but it is now considered mild (she has had transitional tone and steadily improved), now she has hemi but full range of movement except when tired or ill. Started with very very stiff shoulders and no use on her RS.

We used to hope all would be well cognitively but we are having to accept that it is not. She is an exNICU baby, born at term but after a placental failure suffered hypoxia. She has quite severe microcephaly.

[Sneezecakesmum]

Galena the videos are wonderful! I am amazed how well she is doing and she looks fitter than you judging by all the huffing and puffing lol

Hello eyelet. DGS was also a placental abruption baby and has moderately severe dyskinetic CP. He is cognitively ok but very little speech. We are looking at AAC at the moment. Can your DD speak?