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.

The potty chairs are fab. dd has one from Mothercare. She toilet trained at 3.

Thanks for the ideas on beds. I think we're going to try the inflatable tubes with a mattress by the cotbed to catch him. Also a stair gate across the bedroom door, otherwise I'll never get the door open if he's stuck behind it in the morning. OT just shrugged when we asked him for advice. If the inflatable tubes don't work for the bed we can always use them as part of an obstacle course/physio so worth buying anyway.

It's funny the difference in OT support that people seem to get. I wonder if the difference is based on childrens abilities, or different NHS policy in each area. Our OT did almost nothing until a few months ago, then suddenly got us a swifty buggy, toilet seat and bath chair all together.

Good luck to those trying toilet training... We've been struggling with that on and off for about a year.

Thanks, I was looking at the Bjorn potty chair so I might go ahead and buy one, still not sure how she'll get on it without help though!
Holidaybound I should imagine the difference with OTs is the area and resources as much as the children being different. We did have a very good one but she left and I got one that didn't seem to have any experience.

Hi, we got a potty chair from the ot, and we still help ds with clothes, getting to it etc, but to be honest we have only really properly tried toilet training once, and gave up after a couple of weeks. Ds would sit on the potty chair, and he knows what it's for. He also knows when he's wet/soiled but he doesn't care and cares more about not having to go to the bathroom which takes time away from playing. He can both wee and poo on the potty but would rather not! Both nursery and I decided to take a break and try again later given ds knows but doesn't care. Ot useless though but that's because our usual ot on mat leave and not being properly covered.

Hi Holidaybound couple of tips on the inflatable tubes (Dream Tubes). I got the ones for a single bed, and these work great for us (take to holiday cottages/Center Parcs etc).

However, my mum bought the cotbed set for DD2's junior bed at mum's house, and the tubes take up a fair bit of width-space on the bed. So the actual sleeping room is quite snug; no room to roll over really. After a couple of tries, my mum took them off as we thought they were a bit restrictive. There is much more roll over/sleeping space for the single bed set.

My DD2 can climb over the tubes. They're in no way designed to restrain kids who want to escape (ie my DD2)! But they do prevent the unintended bed roll-offs really well.

Hey Inhibernation Thanks for the thumbs up advice on potty chairs! They just look so much more accessible than the traditional ones. It was Mothercare I saw them in too.

Muchado potty training can be so hit and miss, pardon the pun! It only works when the kids are prepared to comply!! Sorry to hear your OT is rubbish. Hope you get the good one back soon.

Gosh, I'm a serial poster on here - does anyone else really want to get a word edgeways??!

Inhibernation just got off the phone from Mumsie. She's offered to gift the cotbed Dream Tubes set (2 inflatable tubes and the fitted cotbed sheet that the tubes go into) to you if you'd like? She's pleased someone else could get the use out of them. She doesn't need them anymore, and they've only been used for about 3 sleeps and washed once. If you'd like them, please PM me your address and I'd be happy to send them on.

Back to OT's. I am just wondering what people think a good one is, what they actually do and what help I can really expect. I am not thinking about equipment, but more about exercises etc. Mine seems to be perfectly happy if ds isn't toilet trained by the time he goes to school, and also thinks many children don't use cutlery until they are about 8. now maybe I am old fashioned but that seems rather too laid back. (DS is 3.6 atm and uses a walker).

everyday - I think your kind offer was for holidaybound.

Muchado - dd has mild Diplegia. She doesn't have much upper body involvement. Her acquisition of fms appear normal so far though being a leftie she struggles with scissors. So OT input is mainly overseeing development, liaison and advice @ school & equipment. She has given us ideas of types of play that help development. This seems appropriate to me given dd is mild. I like her a lot. She has a lovely way with children & is always very positive about progress.

Thanks inhibernation. I actually think ds has almost no difficulty with fine motor it's just the ot never actually says or does anything and so I feel we are guessing and given her attitude to toilet training I am just not sure I trust her. Oh well I think we'll look for a second opinion, if only I can find a private ot. Underneath it all I just think our NHS trust has no money and resources and it's always as if we have to fight for everything even the most basic support. Anyway enough of that how's the sdr therapy going?

Hi guys. We are now day 17 post op. Going home tomorrow. Can't wait. Had to buy a forward walker today. £400!! Ffs -.- sometimes the NHS really is useless :(

Hope everyone else's small people are well xx

sorry guys, that was a name mixup. All sorted now thanks!

I've had a horrible couple of days completing the DLA form . But it's posted now, thank goodness.

Muchado It's difficult to say whether school age is a laid back target for toilet training etc, as I imagine there will be circumstances for some that this target would be optimistic, challenging or indeed unachievable.

I think you should go with your gut feeling though. Can Child Services (or whoever provides your current OT) not provide an alternate OT to give a 2nd opinion? I'd ask them before forking out on private.

All our kids are different, but we get an OT appt roughly every 2 months and each time dd2 is assessed by them at home, we're given 3-4 specific exercises to work on with dd2, a brief on what the exercises are intended to improve, and a quick overview on what the OT be looking at for the next visit. So I know that the exercises we've just been given (rip paper, open material gym bag etc) are to prepare the fine motor skills for tackling self dressing. I know that she's going to visit dd2's nursery twice (Oct and Nov) and provide direction for dd2's 1:1 carer so that nursery can also work with us towards these targets. And on our next home visit in Jan, she's going to discuss dressing/undressing and we'll review if we think we should start toilet training (I said it was still too early for us now, as dd2 is showing no weeing awareness). Unprompted, she did however, suggest the potty chair, as others have advised further up this thread.

Sorry you feel like your OT is letting you down , but I'd get their employer to try to to provide an alternate OT if current OT wasn't listening to your concerns. Hope it works out ok. It's rubbish when you feel like you're fighting for every scrap .

at you having to buy a forward walker Fizzy. It is truly rubbish that it couldn't be provided. I hope you're all comfortable back at home now though. Take care x small folks here are doing fine

I am really upset today probably a culmination of a few things. I have posted before about my daughter, a twin just turned 2, not walking and with mild cp.

Yesterday we were at a parenting course which was for parents who had multiple children. There were many issues raised like crying, biting and feeding and sleeping issues. Although others had gone through the journey of premature birth, low birth weights and neonatal all there children seemed to have escaped unscathed and were "normal". I was sat there thinking your issues are so petty and trivial compared to mine and you don't realise how lucky you are if your only issues are a bit of crying and a lack of sleep. My daughter has been attending weekly physio sessions now for months. She has to endure being put in to a standing frame on a daily basis and progress is frustratingly slow. She has been fitted for piedro boots which we should be getting within the next few weeks. The Dr's and her physio seem to think that she is on the mild end of the scale and that her problems are only in her lower limbs. We are pinning our hopes on these "magic" piedro boots. Does anyone know if they make a big difference?

Also I was at crèche at Church this morning. A few things here as well. One of the other toddlers who is nearly a year younger than my Daughter is now on her feet and walking which made me feel like crap as my Daughter is nowhere near walking. It just seemed so effortless for her while everything for my Daughter is and effort and a struggle. Also one of the other Mothers started asking questions about how my Daughter is and how she is progressing. I said that she goes to weekly physio and is getting special boots. Then to my shame I started filling up with tears and then she said that she was sorry if she upset me. I came home feeling like a right idiot just because someone had asked a few questions about my daughter. Have been feely teary and upset all day. When I try to say these things to my DH he is like, "these are the cards we have been dealt and we just have to deal with it" "You would be better putting your energy into concentrating on getting our daughter better rather than concentrating on other peoples children" I don't usually feel sorry for myself but today I am. I just thought that as she is supposed to be mild and after the months and months of physio that we would be further on than we are now. I just want her to be able to walk. Physio is arranging for her to get a kaye walker and I am praying that it is only going to be temporary to get her going and not a permanent fixture. It doesn't help too that she is a twin and her twin is not affected. I just feel that she is falling further behind her twin and her peers. I don't know what else we can do other than what we are doing already to help her?

Sorry for the long indulgent post but it actually feels good to get things off my chest.

Hi albaba, my son doesn't have cp but he has an Undiagnosed genetic condition that to me presents very similarly to cp hence I hover here ( I hope no one minds) I know exactly how you feel , my ds is 2.7 and doesn't walk , he has a Kaye walker but still no where near walking independently . It's so hard mixing in with their peers and watching them zoom ahead while we are getting left behind. I don't really have any advice but just to say I know how you feel and it can feel rubbish .

Albaba, vent away. I have had all of those thoughts, and more about other children, at nursery and generally. Also has them about ds splints, and his kaye walker, and the standing frame. Although it sounds trite it does get easier! Although not always, and I still have those thoughts. Ds is also supposed to be mild, but he still can't walk. The real issue is that progress is slow, and always will be.

One of the best bits of advice I had was not to worry about what we should or shouldn't be doing. I do still worry of course, but I also want to be a parent not a therapist. So now I am trying to think of things I can do with ds which are fun, but which I want to do anyway, so today ds and I went to his swimming lesson. He's rubbish, but he enjoys it, I enjoy it as he's less different in a pool than on dry land, and it just so happens to be good therapy. Ditto trike etc. but if ds doesn't enjoy we don't and it becomes self perpetuating.

I was also told by an adult who has cp that they never wished their parents had done more therapy. Had more fun yes. I am not saying it works for everyone but it works for us and I just push ds to do what others do.

I fo still get a pang when I see a colleague who had a 23 seeker, who is not disabled. But that's life. It's not fair.

Thanks on the comments on the ot. That's nothing like what we get, no exercises or goals! It would be good to ask for a new ot, but that's not going to happen in my trust so tbh I would rather spend money, than time fighting the NHS. It's easier for me in the long run, and I am lucky that money isn't really an issue, but time is.

Albaba. What you are feeling is normal and everyone goes through this, its one of the hardest things to cope with and it gets easier but never goes away and some days are worse than others. It's especially hard to hear mums making such a fuss about their baby crawling and 'getting into everything'. Oh if only . I know they go on and on about things that are so minor for us, but it's only fair to say it is important to them! My DGS has level 4 CP so is very affected (high side of moderate) and my daughter couldn't be bothered with all the competitiveness of other mums, and opted out of some groups. But other friends have filled the gap and old friends have been a real support.

DGS has piedro boots and AFOs but he wears the boots all the time at school and they are really good. They are quite heavy and some kids find them too clunky but they create such a stable base, especially round the ankle. I hope they have chosen a nice pink pair for you as the dark ones are very boyish! We have noticed that since wearing his shoes all day at school with heel cups in he has developed arches and his feet are flatter to the ground, so its a good idea to wear them as much as possible. He was supposed to wear the dreaded foes (AFOs) but never did

Thanks all for taking the time to reply to me.

Sneezecakesmum can I just ask when did your DGS began to walk and does he walk "normally"? Also does he walk unaided or does he have a kaye walker? It just seems to me that every time I look at the Daily Mail there is a story X has Cerebral Palsy and will never be able to walk normally without having SDR. This scares the life out of me. My Daughter is on the mild end of the scale and surgery has never been mentioned but I keep thinking your story is so like mine you could be me. Before having my children I would have just glossed over these stories and not really given them a second thought but now they really strike a chord with me.

We have gone for pink piedro boots, might as well make them as girly as possible and they really don't look too bad under jeans. I just hope they help her be able to walk and have a normal life and do things that over children do.

I hope I didn't come across as a jealous witch. I just really felt it today. I don't wish other children bad. Sometimes I just wonder why us. Life can be very cruel sometimes.

Alibaba your reaction at the crèche is understandable and whilst I can understand your h's philosophy it doesn't help you now at this stage in the journey. It was very hard for me too going to baby groups and seeing children much younger than dd running around when she could only walk with a walker. She did learn to walk (at 2.5 yrs) and even run (sort of). We opted for SDR though because we knew the spasticity would always be a problem for her and cause deformities as she grew. We're a couple of weeks post SDR now.
Muchado - therapy has been ok. Progress in therapy slow but steady. Delayed by serial casting. Casting was to delay heel cord lengthening. Still not back to walking independently but has taken some independent steps and continues to get stronger.

I would just like to add though that perspective is everything as when she started using the walker I was delighted that she could manage it. And after that it was walking holding hands.

hi have a ds aged 18months with quad CP, not crawling or standing. does anyone have any thoughts or experiences of beginning conductive education at this age that they would pls share with me. I'm thinking of starting him at the Paces school in Sheffield for conductive education. any advice/thoughts appreciated, thanks

I don't know much about it from personal experience as there is nowhere near me, but I think starting anything as young as you can is a good thing. Good luck

Everyday- ds is going to have an exciting night tonight as the dream tubes arrived today. Thank you so much!!

Salbook - I'm not really clear what conductive education involves, but I'd definitely recommend getting extra support early. My ds started a sn playgroup where they incorporated 1-1 play therapy into the sessions when he was 1. Ds has quad cp and only just crawls at 3.8 but his OT is alway surprised how good ds's fine motor skills are. I think his fine motor skills are only so good because of the skills the playgroup taught him and us. Although none of the games were anything we couldn't have thought of given lots of time we never would have had the time/energy to come up with so many ideas while looking after a little boy who wanted attention all the time and never wanted to sleep. As long as help is given in a positive and fun way then I think any kind of help is good.

Albaba your DD is much luckier than DGS as he is quite severely affected and I promise I don't resent your DD just as I know you don't resent other children. I did say to my daughter one day, why him and she just said, why not? It's going to happen to someone and it's just random mostly. She never is sad about the extra work, appointments and general crap for herself, but she does get sad sometimes about her gorgeous boy.

DGS has a different type of CP and is dyskinetic which means he has difficulty controlling movements rather than making them in the first place. I think your daughter will do very well if she is mild. I am sure she will get there in the end, and you will start to notice differences less. Probably not go away as in cured, but manageable. We always tell ourselves however bad the day is, DGS could have been far worse.

SDR looks terrifying on paper but the operation is getting better and safer, so maybe in the future depending on how things pan out? It's not an option for us as DGS is the wrong type so its one less thing to stress over.

DGS walked in a walker at 2 (I bought an ancient rifton gait trainer on eBay) and off he went. His arms are worse than his legs so that's probably why. He couldn't manage a Kaye because his arms are so weak. He now has a Kidwalk and chases other kids round the playground. He will never walk independently we think, but it is what it is.

Salbook1. A friend of ours' DS went for conductive education in Sheffield. Nursery I'm sure, and did really well there. He is spastic diplegia and has had SDR in the UK. I would ask to sit in on a couple of classes as not everyone is into CE, but they can get amazing results. Can't comment personally, sorry