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

hi everybody

is it just me? (dd loves swimming so I experience this problem allot)

AIBU to think that 'disabled facilities' eg toilets and changing rooms are totally inadequate for alot of cp kids?

they're bigger so MAYBE you can get their chair in there but that's about it. If there's a changing table it's baby sized which dd 3yr is way too tall for. her dystonia means she flaps around like a fish when laid on her back on hard surfaces (so benches or the floor - yuck!) I.ve even had to recline her snappi and attempt to change her in there!

another (unrelated) thing that gets on my nerves are playsuits - you know the all in one top and shorts combo. ok. so let me rephrase... I really like them but after the age of about 12mo it's pretty much impossible (I've only found 1 in the last 2 years) to find any that undo (have poppers) at the bottom, since dd still needs nappies and can't sit or stand up these are out for her

so 2 questions

1. AIBU (am I being unreasonable)?
2. as a cp parent what are your top 3 pet peeves/ biggest everyday problems?

Hello everyone, just checking in after a while away. Lots has been happening. We moved house, moving areas, so have had all the stresses of leaving dd's wonderful preschool, and getting all the support in place for her new nursery in September. Luckily we can still stay under the same hospital, but we need to change physio/OT etc, which has a 10 week waiting list until we are seen!

We had our MRI results, which show PVL, so she now has an official diagnosis of spastic diplegic CP. Like you babs a relief to know it is not anything progressive which was mentioned as a possibility prior to the MRI.

DD's physical progress is still slow, I know, you can all relate to this and the frustrations it brings! Although, Mainly on my part it seems, because, DD thinks she can do everything other kids do .
however, she is starting to walk more confidently with her Kaye walker and her standing with support is much improved. We are still so behind on transitioning independently from sitting to standing etc. but I keep faith that it will come. Although if I am honest, I am not feeling too confident.

I am also 34 weeks pregnant. So it's all go at the moment, So far, everything is looking well (fingers crossed, whistle, pray !). DD was born at 27 weeks so it is a relief to get way past that stage with a pregnancy similar to that of DD1 who was two weeks over due. My mind is starting to get onto the birth and the safest way of delivering baby. I know dd's CP was as a result of her prematurity but I understand some children's is a result of problems at birth. For this reason, I wonder if a csection will be the best option? Has anyone on here gone on to have another baby and how was baby delivered??

Anyway enough from me. to everyone x x

I have a consultant's letter authorising ELCS if there is ever a next time (there won't be)... (Birth injury)
Lots of new names, but familiar issues! I pop in now and again and say hi and see who is around - dd2 (dc3) has athetoid cp (originally Dx spastic quad, but re-Dx at 4) and will be 12 next month.
Haywire, do you use fledglings? They have popper clothing in much bigger sizes for exactly that reason. Might be a bit pricier these days, but if you are in receipt of DLA it could be spent in worse ways...

And our disabled pool changing has full sized single bed sized rubber mattresses for changing... Maybe campaign for those?

I'm not sure I have any pet peeves at the mo... Except for the ongoing assumption that physical disability always equals learning disability, and that school expectations should be lowered accordingly. Kids should be treated as individuals - dd will have enough bias working against her without having her academic achievements artificially lowered by poor goal setting in a mistaken assumption that this is either necessary or a nice thing to do. Grr.

Summer - my dd is the same and believes she can do everything that others can do. We are not disabusing her - our job is to work out how, lol! (We are still working on ice skating, the best we have managed is wc on the rink or lake lol). I don't want her ever to say 'I can't do that' although we have been close a few times!! She just spent her first week away at guide camp - the first time she has ever been anywhere with no familiar adults or children, no one who knew her at all. Terrifying, but I am so proud of her!

We moved a lot and I used to get her consultant to do the referrals three months before we moved, so that the new team was in place when we arrived.

Keep up the good fight, everyone

Thanks for the tips madwoman.... I definitely know what you mean about the perception that physical disability == learning difficulty. especially from people who should know better. there's 1 particular registrar at the hospital who really gets on my nerves always insinuating that we shouldn't expect too much from dd

btw madwoman which pool is that?

We are living o'seas at the moment, hay, (ask me about emigrating with a disability lol) but do remember them in one of the pools we used in the UK too - maybe farnborough, I think they have a para team training there too? We move a lot. essentially it's like a regular single bed with a rubber mattress, and a single strap/ belt like an airline seat belt. We haven't needed the changing facilities for a while - a bigger cubicle will do us, but when dd was using her wc they were v useful. Most of the pools we used in Germany had them too in the disabled changing rooms.

Hello All,
Am glad to have found this thread and will have a read through tonight when I am home

My DD2 is 2, her consultant has not officially dx her with CP, they have been reluctant to do so. She has a complicated medical history and apparently does not fit a profile for CP. She has slightly increased tone in her legs. She doesn't even sit up yet and isn't talking. She understands a few simple words. She has CVI so we aren't sure what, if anything, she can see - some days she appears almost totally blind. We don't know if her delay in gross motor skills is partly due to her inability to see.

We are in limbo really. We don't access support groups because we don't have an official dx. I would love to find someone with similar profile to my DD so I would maybe see a glimpse of what the future held, but she has a very unique set of circumstances (I can't post what as it would be outing) which mean they are unable to tell us very much about her prognosis, and when all her specialists sat in a room to 'label' her they couldn't agree and came back with nothing. One letter home said "Emerging CP" but they later retracted that.

I wonder if she will ever talk, be able to be toilet-trained, ever walk or be able to engage in play beyond the baby toys she currently throws around, will she go to school, ever live independently.

If anyone can read this and recognise how I feel I would love it if you could post.

The above all sounds very enigmatic I know - I'm sorry!

When was the last time they did a brain MRI, boots? Dd2 had one at 12 days (they had to transfer her as they couldn't MRI with oxygen requirements where she was born) but then again at 4 to give a clearer picture of the damage. They fannied around with her dx until she was 2, just calling it developmental delay, so it isn't unusual. They all knew it was cp - she had physio, slt from discharge from scbu and HR DLA from 6 mos, but were shy about the actual labeling. Your dd sounds v similar to someone we shared scbu with, but her issues were very much due to her prematurity. So much of it is a waiting game.

We attended a pan disability group for the first two years. There were tots with lots of dx - it was run by a SLT and a physio as a feeding and communications group. Do you guys get portage?

I used to say that I wanted a crystal ball to look into to see what she would be like when she was 5, as it seemed it would be easier to deal with/ plan etc. be kind to yourself x

(I would also say that even a dx may not give you all the answers. When dd2 was officially dx spastic quad cp, I did a lot of investigations, and the resounding response was that outlook was pretty poor in terms of walking/ talking etc - essentially, she wouldn't). These days none of her early therapists would believe it is the same child. In fact, I'm pretty sure her infant school teacher would struggle, too.

Nothing really changed for her until she was around 3 or 4 and then she made some massive developmental strides, and then development continued, but much slower. But at 2, it was all impossible to predict, really - hence the crystal ball longing!

hi boots

welcome.

A dx whether a working one or a confirmed one won't give you all the answers and will likely give you more questions. Every Child is different (I know I know I hate that phrase but it is actually true) and their or comes will be different.

my dd is 3 and can't sit or talk either however we are teaching her to feed herself and currently potty training. our outlook is that if we don't get her to (or help her to) try she can't learn. so my advice is forget about prognosis and try your best to facilitate what you want your child to be able to do

can anyone recommend a really good private SLT in London?

Does anyone ever get times were things just hit you that your child is so different to their peers and it is getting increasingly obvious as they are getting older?

We were out a country fair type event today. We took our dd's 3 with us. We had promised them ice cream when we got there but there seemed to be every type of stall but ice cream. So my dd had a complete meltdown when she didn't get what she wanted.It just seems to be that when she gets something in to her head there is no reasoning with her until she gets what she wants. We have tried the softly softly approach, reasoning with her and threats ie if you don't calm yourself down we will go straight to the car. I ended up leaving the fair and going to the garage to get her ice cream to keep her happy so giving in to her demands to keep her happy.

We ended up sitting with a few people we know from our town. There was three other children two had just turned 3 and one is nearly 4. The other three children were up dancing to the music, chasing each other about and just being children enjoying themselves. It meant their parents could sit back and have a drink and something to eat and have a chat. My dd was ok for a while we got her a hotdog. My dh was having a few drinks and kept having to get up for the toilet and every time he got up she started crying and he had to take her to the toilet with him. Otherwise she just stood and clung to his leg. My dd then decided that she wanted her Daddy to take her to the park and kept pulling at my dh's arm. We explained that we would go later as we were enjoying the company. She kept persisting and shouting "up Daddy up". Again another tantrum ensued with her screaming and throwing herself on the grass. People were looking and it was embarrassing. We ended up having to leave and do what she wants to keep the peace. When I looked at the other children they were all having great time and I was like why can't you join in too? It's not like she didn't know the other children.To me they all seemed so much more mature and I had a whingey tantruming baby. It impacts on her sister too because she was having a good time and then we had to get up and leave.

It meant that what should have been a nice family day out was marred by her behaviour. I came home feeling stressed and worn out by having to deal with her. I certainly didn't see any other children getting on like she did. To be honest even though she is my dd today I really didn't like her. My other dd in comparison would be more than happy to join and and take part. In comparison things are so much easier with her.

I just thought that as she got older things would be getting easier and if anything I think they are getting more difficult. It's so hard though because everyone else's children developed normally and mine didn't. I keep replaying things over and over and asking if there was anything I could or should have done different? It's the fact that they are twins too that one is perfectly "normal" and one isn't is a very difficult pill to swallow to the point were I see nice normal twins walking together and doing twin things gives me stabs of jealously and this is not something that is going to go away or change and I just feel so sad for what should have been.

hi Albaba

I totally get the stabs of jealously and the older they get the bigger the gap between our DC and their peers seems to get.

... so far my dd has reserved her tantrums for when she's at how. .. As for dealing with them. ..
it can be difficult trying to teach them to manage their disappointment or react appropriately to not getting their way. But their condition is something they'll be dealing with their whole lives and there'll be plenty more occasions where things won't go their way. We've got to teach them how to handle themselves, which could mean some shouting, screaming and crying when we say 'no'. But I'd rather deal with that now than when she's older, bigger, stronger and louder.

Albaba I experienced similar recently at a friend's barbecue - all the other three year olds were running around playing together and I had to walk around with DS holding his hand helping him walk while they ran rings around him, by the time he/we caught up they had gone again. I felt sad for him and also sad for myself because my experience was so different to the other parents, who could stand around and have a laugh and a drink. No answers obviously, but I understand. Must be especially difficult when there's a twin for a direct comparison x

Good luck to all your LO's starting nursery/preschool or reception.

I have just left dd crying at her new nursery. We moved over the summer to a completely new area, so we had to leave her lovely preschool. This one seems very nice and I am sure she will settle but it is still very hard.

Hi everyone, hope you're all doing ok.

Summer I'm sure your DD will settle soon, bet she'll have loads of fun. How are you doing?

Things moving apace here. DS has botox and serial casting scheduled for a few weeks' time, and we have a referral being sent off for SDR at Great Ormond Street.

We've been to a different (private) physio clinic in Essex which was really amazing, they did a great assessment, really took their time and were really good with DS and he let them do loads of stretching and new stuff.

So it feels like we have more of a plan, which does all feel positive. But still a few wobbly bits, like his peers at nursery 'helping' him walk around the room when he doesn't have his splints on which crushes my heart a bit. Will have to explain to him very soon that he will be needing to have casts on both legs for about 6 weeks, which he isn't going to like at all. Trying to really start communicating better about his condition, at 3.4yrs he is mature enough to understand the gist , and we've now got a blue badge for the car so he keeps asking why his picture is on the card etc. So time for some frank but gentle chats. Which I'll have to steel myself for

Quiet on here at the moment, hope everyone is ok.

Botox and serial casting tomorrow, have spoken to DS about it, think he knows what's coming but he's going to be upset with the casts on. Lots of Peppa Pig/ipad stuff and treats I think for a few days.

Anyone have any good strategies for dealing with casts?

Hi all. I was hoping to resurrect this thread as it used to be really bustling and I enjoyed following it and it just seems to have completely died recently.

I don't know if anyone else has had this problem. I am actually quite embarrassed about it. My dd is 4 and is still not reliable about potty training. At the nursery this week we were taken aside and told that a few times this week they have noticed a strong poo smell coming from my dd. She is bathed regularly and has fresh clothes daily. This is gross but we found that when she does a poo she is putting her hands in to her pants and rubbing them in it.

Another problem is that she won't tell you that she needs the toilet. If you set her on the toilet she would go and do a pee for you but if you didn't she would just wet herself. There was one day at nursery this week she went through every change of clothes that she had which must have been about four or five changes but today for example she has been completely dry all day so I know she is capable of it. She has a twin sister and she is completely reliable about going to the toilet but with my dd it makes it awkward about going out places and although she wears pull ups at night we feel she is too old for them during the day. We want her to be as independent as possible and not people laughing at her and thinking she is smelly. She has a classroom assistant for preschool 1 to 1 attention and with this she is ok but this is only for a certain number of funded hours.

With my other dd she basically decided she didn't want to wear nappies anymore and although at the start there were accidents she pretty much potty trained herself. Anyone else have any problems like these or any advise? Thanks Albaba.

Hi All,

I wish I found this thread a few years back...
My DD is now almost 7.5, was born at 26 weeks, emergency CS, due to me having severe preeclampsia. She had brain haemorrhage and hydrocephalus as a result and epilepsy . At the time, we were told she wouldn't be able to do anything for herself and was given 5 years to live. She was diagnosed as having GDD and hemiplegia, although she has tightness in all 4 limbs, but one side is much more affected than the other
Well.. even if she isn't independent at the moment and she might never be, she is such a happy girl, enjoys horse riding and riding her Tomcat trike (the best thing we ever got her), swimming and so much more.
Albaba, I don't know if that helps, but my daughter still wears pull-ups/nappies during the day/night. Her main issue is that she doesn't say when she needs the toilet even though she knows what it is for and she would 'perform' when she sits on it. It can be frustrating, but I'd rather have her wear a nappy than worry about her wetting herself, especially when going out.
Over the years I went through a mixture of feelings about what happened and what we have to deal with, but we are trying now to look at the positives and at what she CAN do rather than what she can't.

I have a question for those who did/still do Bowen therapy. Did you do physio with your DC whilst doing the Bowen sessions? I read that you shouldn't do any physio 2 weeks before and after the Bowen, is that what you did? Thanks!

Hi Moominmamma13 DD2 has been having Bowen for 2 years now. We never deconflicted the physio and Bowen. Our Bowen started as weekly sessions, as was our physio. Bowen, two years on, is now every 2-3 weeks and we get a 6-weekly physio review, although we do the physio-recommended stretches and exercises at home/school everyday. Happy to answer any Q's on our experience of Bowen Technique.

Sorry, where are my manners. A very warm welcome to the thread Momminmamma13. My DD2 is 4 years 5 months. She wasn't expected to walk, but is doing very well in mainstream Reception, without her wheelchair (only used for school trips/family days out). I love what Bowen has done for her. I can't prove it, statistically verify it or justify it, but I do believe in it. And I am the most cynical person I know. The Tomcat trikes are brilliant, aren't they? We need to get swimming lessons for DD2 - thanks for the nudge. Your DD sounds fab, with all her fun interests.

Hi Everyday, thank you for your warm welcome.
Happy to hear you're DD is doing well.
Re Bowen, how did you get about finding the practitioner? Did you just go for the one nearest to you? How did you know they were having the right qualification? Did they advertise on the website that they treat/have experience in treating children with CP? I am tempted to give it a go, but my DD has also epilepsy and I wouldn't want to do anything to make it worse as it's not entirely controlled at the moment . Do you know anything about Bowen being contraindicated for children with epilepsy?
Sorry about the amount of questions :)
Hope everyone else is well.

Moomin I googled "Bowen ". Only one came up in our area, but now there are quite a few. On their website, they posted their qualifications Cert ECBS MBTER and their client profiles included a 2 year old with Hemiplegia. However, it was really on the first meeting and just feeling comfortable that I decided to give this a go.

On the first meeting my DD2 was totally at ease with them (husband & wife). I liked that they: are an ex-Forces couple (we're ex-Forces too) who practise in a therapy room in their family home; refused to take payment for children so we've had a free service for over 2 years now, and are keen to keep us on their books free of charge despite me offering to pay; are keen to hear what our OT and physio have been advising us and working along those goals; actually have at least 3 other children/teens with CP on their client list, as we've met them in the waiting room.

The NHS are not remotely interested in Bowen . I've explained to our physio and paed but they just look at me as if I've been taken in by a quack (they were both surprised that we do not pay for the service). Funny how neither can explain the exponential improvement in DD2 from age 2 and how she can possibly walk given her early diagnosis.

My DD2 thinks she's just off to play with Darren whenever we have an appointment . He's fun and engaging, but calm and gentle at the same time. Our appointments are only 20-30 minutes long - Darren will work with her until she gets restless, then guaranteed she falls asleep on the car journey home.

DD2 does not have epilepsy (EEG came back clear for the condition after a few seizures in the early years). Therefore I cannot advise on your contraindication question. However, to look at what's happening, the Bowen is like a very gentle form of massage that my DD2 either describes as 'sleepy' (relaxing) or 'tickle'. I would advise asking a Bowen therapist if it would be compatible. Our next appointment is 3 Nov and I will ask our therapist then for you too.

Don't apologise for the amount of questions - this is how we find out stuff!!

Thanks Everyday for sharing your experience, very helpful. Your practitioner sounds great!
The ones I found so far have very little info on their website about the type of clients they have and no reviews/testimonials, so not quite sure...
I've contacted them tough regarding suitability in children with epilepsy, but if you could ask your therapist about it too, that would be great. Thanks again