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

I have flown with DD but she can sit unaided so didn't need seating. I would contact BA and see what they can offer. They were good with us as let us take the pushchair as close as was possible to the plane so DD didn't have to walk far. They stored it somewhere separately so we could have it asap after landing. How exciting - hope you're off somewhere nice and hot!!

DD starts Brownies tomorrow. V nervous for her as she'll want to fit in and keep up with the others. Always that extra level of anxiety when she starts something new although I'm sure she'll love it!

Anyone else hear Sophie Christiansen being interviewed today on R4 for new programme about disability? She's fab an amazing role model but was hard to hold back the tears when she was talking about her birth..

Is that no triumph, no tragedy? Will look on iplayer.

DGS had Botox today just 1 injection at the top of both inner thighs to see if it helps with the scissoring.

It's a bit experimental as he is not spastic but dyskinetic. A sort of trial to see if it's any use.

What happens now? Never had Botox before so do the physios get told, organise more therapy, what type of additional therapy. Totally clueless (for once lol!). I know it takes a few days to kick in and lasts around 3 months, but do we stretch more? Is it uncomfortable for long? DGS was a little star and acted as drunk as a skink, giggling at nothing and hiccuping.

And if you thought SDR was scary the neuro mentioned deep brain stimulation, in passing but omg!

Yes - that's the programme. Well worth a listen..

Good luck with the botox - I only know parents whose children have it for spasticity so I would guess the therapy after might be different?

Have heard of deep brain stimulation which sounds scary but exciting. I'm holding my thumbs for Parkinson's treatment developments as I think it will hold the key for DD who is also more dyskinetic. That and stem cell research of course. I wonder what will be possible in the future!

haywire how exciting to have a holiday booked!!!
we recently went to euro Disney and took out insurance with The Family Fund. (Comes up on google search). DD has undiagnosed CP and is still on oxygen. It's a charity which helps families with disabled children. They insured the whole family and I was amazed at how reasonable it was, in fact I rang up after getting the quote online to check I had done it correctly . They were so helpful, didn't want to know specifics, all they requested was that we travel with a letter from GP/consultant saying that dd was fit for travel.

I don't have any knowledge of flying and seats.

sneeze Did you get additional Physio sorted out? Botox usually takes about 10 days to kick in then last for 3-6 months. If the main aim is to help with scissoring and I guess help hip formation. Lots of hip flexor stretches and strengthening exercises. I can't remember your DGS ability level but things like sit it to stands astride a peanut ball or a roll, RDA, trike riding especially if he has leg gaiters to keep the legs in perfect position, bridges, x legged or ring sitting, side stepping or kicking out to the side are the things that spring to mind.
DDs incision site was usually sore for 24 hours or so and sometime had flu like symptoms about 3 days after. Good while it worked but heart breaking as it started to wear off and her scissoring got worse again.
gone for as long as possible we traveled with DDs forward facing 5 point harness seat as she was comfortable in it and we had something to use on our holidays. if you google car seats and BA their policy should come up. We used an old style luggage trolley and budgie cords to transport around the airport. I had it down to a fine art. DD in front sling, rucksack and pulling car seat behind me!

Kaffiene . DGS is GMFS 4 but walks short distances in a walker, very little stamina. Out regular physio and OT have just changed so we don't even know who the physio is, but school will know so when it reopens we will get his/her number and contact ASAP. The neuro did write to our doc (different trust from regular care) but we won't wait for the official channels to chug along. We will do as much as possible at home and school have a physio who runs the PE classes. I'll give them a note to give her too. Trike is out whenever the weather is fine and we will collect him from school on it. Also riding every Monday, and we will concentrate on adductor specific exercises. I really hope he doesn't go back to scissoring if we can get it under control. It's experimental as the scissoring may be due to high tone which fluctuates as he is dystonic/athetoid rather than spastic.

gonehaywire This is a special air travel seat for children with disabilities, which was going to be stocked by some airlines and is also available for hire from the charity which developed it:

meru.org.uk/what-we-do/travelchair/

You can try it out before the trip to see if it's suitable (it's for children from 3, I think)

meru.org.uk/what-we-do/travelchair/passengers/

enjoy your trip!

Hi everyone :) DD2 is having Bowen every 2 weeks. We see a difference/improvement in flexibility and an 'awakening' of her more affected side (therapist concentrates on this side). Her balance has improved too. But as with most of these things, I cannot scientifically prove that the Bowen is making any difference over and above what would have been her natural development path. However, DD2 likes the therapist, enjoys the treatment and appears visually more relaxed afterwards. She normally has an afternoon nap on Bowen days. Our physio knew that some intervention was taking place between physio appointments, such was the unexpected exponential improvement in DD2 when we started this about a year ago. It looks like a gentle massage, I honestly believe you have nothing to lose by giving it a go.

hey just checking in. DD2 climbed one of those Little Tikes climbing cubes. I know it's for 18 months + and she's nearly 3, but she climbed to the top by herself. Happy days in the Everyday house :)

Has anybody got any tips on getting their child to wear afos. My dd age 2 years 7 months has just got afos this week having previously worn piedro boots. Needless to say they have gone down like a lead balloon!! Is it just a case of persisting as she didn't like her standing frame or piedro boots at the start but got used to them after a while?

Also what is the best shoes to wear with them. We got her a pair of canvas shoes out of Dunnes. Her Orthotist said she was a size 6 with afos and a size 4 1/2 without them but they still feel snug with shoes and socks on.

Also do they really work? We have done over a year of physio, standing frame & piedro boots yet she is still not independently walking. She can now walk for short distances holding an adults hand so is making progress but everthing is so painfully slow.

Hi Albaba, didn't want to read and run. Sorry, DD2 hasn't got afos. Hopefully someone will be along soon to help.

It's so hard when the progress seems painfully slow, isn't it? DD2 is going to be 3 in a couple of weeks, so ours are about the same age.

Hello everyone. New to this section of mn, so a tentative post from me. My DS is 2 and is not walking, has issues with balance (cannot stand unaided), once took 5 steps independently in november (he was excited and literally ran for it) but nothing since.

A friend mentioned ataxic cerebral palsy as her daughters friend has it and I looked into it and it's ringing some bells. DS was prem (born 30+5), was late to roll, struggles a lot with his transitional movements, he struggles to sit from laying down (can JUST do it with lots of squealing and grunting), finds it very difficult to pull to standing (he can, so long as what he's pulling is grippy and sturdy enough and at the right height - and he's wearing grippy enough shoes etc etc), but would happily cruise for England all day (once put in position). He can sit for ages (slightly hunched) when plonked in position. Has never crawled, HATED "tummy time". Last bout of physio we were recommended to encourage crawling whereas I hadn't really done that before as he hated being on his front and just assumed he was one of those children that didn't crawl. Well he's been cruising for a year now and still unable to pull to standing. Crawling is slow progress, he just doesn't want to, he'd rather be standing up. He can four point kneel and my DM swears he did crawl last weekend unaided but I didn't see it. We were encouraged to help him in a high kneel which is ok, but he tips forwards unless leaning on something. Basically has a very weak core which is all the physios etc have said. I'm only just starting to think there might be something more at play. He is very, very good at fine motor skills though like doing up clips, picking up small items, hand to mouth coordination good etc so i feel if he does have ACP then it's very mild.

He's had 2 bouts of physio (6 x weekly), hydro (6 x weekly), and I've been pushing and pushing to get more support - now have a fresh physio batch starting this week (twice a week for six weeks so much better). We don't have any kind of diagnosis for him but having read a bit about ataxic cp he does sound like he has some traits. The balance mainly, he also has hypermobile legs (i think this is correct term).

We have his consultant review next week and I wanted to ask you all if there's anything you think i could be doing/saying/asking for? Is it worth asking for a private referral? We aren't swimming in money by any means but would make the sacrifices. I would say the NHS has been excellent so far but we are seeing frustrating slow progress. Thank you x

Hi ShakkaKhan and welcome!

Weak core/trunk muscles are very common with CP but can also be a symptom of other disorders as well as being benign as a symptom in itself. Have read that low tone in itself is not necessarily a long term issue. Great that his fine motor skills are very good and he's getting Physio for the gross motor issues. I think where CP is very mild it can be hard to put an exact label on it and even to dx it. My DD (6) is affected with her balance although is now quite 'able' as can walk, jump, run (in her own way!) etc but does have difficulty with fine motor skills. She could also take steps before she could stand unaided too!!

Albaba - sorry no experience with AFO s but hopefully someone can help.

Everyday - fantastic with the climbing skills! You'll have your heart in your mouth now. DD fell off the top of one of those cubes when she was about 3yrs and still has the bump on her head even now

itsnothingoriginal too true :) We've had a fall already and a bumped head. While on one hand I think she needs the space to experience and learn from all the excitement and achievements, on the other I'm seriously considering getting her some head protection. Is protective head gear normally/ever worn by kids with CP? - Question to anyone lol.

Hi ShakkaKhan (excellent name!). Welcome to the thread :) Although our DD2 has high tone, she sounds quite similar to your DS when she was 2YO. DD2 cruised before she could crawl. Then when she did crawl, it was commando crawling (on tummy propelling forward with elbows rather than 4-point). We've found services for paediatrics to be excellent - physio, OT, consultant, onward referrals etc. The only 'slow' services have been SaLT and wheelchair services (both circa 6 months waiting list). It seems like the money, support and drive exists within the NHS for paediatrics, as the more they can influence and improve outcomes and maximise potential at this young stage, the greater the benefit to the individual (and carer) and also the greater cost saving to the NHS in the longer term. However, I do understand it can still be a postcode lottery. We've not considered private referrals as our services in our region seem to be well co-ordinated and appropriate.

I would ask what was required to look to achieving a diagnosis (we had an EEG (came back clear) and an MRI (that confirmed CP)). I know labelling seems unimportant when you have a beautiful boy in front of you. But it will help in the long term for statementing and getting the Social Care support etc that you may need. Our DD2 is just 'V'. We don't consider her disabled. She's 'V'. But when explaining to the nursery why she needs extra help, or explaining to other mums in the schoolyard why she is developmentally delayed or when applying for DLA, the diagnosis really helps. Happy to share more - ask away :)

thanks itsnothing. As much as I hope it's not CP, it would be good to get a diagnosis - not that it would really change anything, he's still my amazing little boy, but it might make it easier to access support and treatment for him rather than feeling like i'm constantly kicking up a fuss for "just a late walker". I just feel so sorry for him sometimes, children a year or more younger are so, so much more mobile than he is. Like seeing something, crawl over and get it, then sit up. He just can't do it. I've recently gone back to work (something else I feel terrible about) as it was just such hard work helping him move about all the time. Helping him sit, helping him stand, trying to force him to crawl, trying to do x y and z. I feel like I've now abdicated responsibility so I can go to work all day and sit and drink hot tea and go to the loo on my own (financially we can afford for me to stay off but i wanted a part time job to get away). Feeling really down about it all and wishing he was 'normal'. Which is terrible and no help whatsoever (and probably offensive to some, I'm sorry).

thanks also everyday, more useful advice there. He does the commando crawl of sorts - it's more dragging himself along the floor using his hands (legs straight out behind him), rather than using elbows. He's actually pretty fast at doing that. But still can't sit up when he gets wherever he's going. How old is your DD doing now, and is she walking supported? Was she diagnosed with CP?

Hey ShakkaKhan DD2 will be 3 in a couple of weeks time, and was diagnosed with bilateral asymmetric spastic CP. Sounds a mouthful but means: affected both sides, but to different degrees (right side is worse) and spastic meaning she has high tone (stiffness) in her limbs. She has been delayed in all her milestones. Our timeline: sitting at 19 months (normally by 8), diagnosis at 20 months, cruising at 24 months, 4-point crawling 24 months, very slow unsteady walking short distances at 26 months. She now walks unaided but is very slow and takes effort. She can walk around the school playground, but would struggle walking up the high street iyswim (too far).

We've been referred by the physio for wheelchair services, but our waiting list is about 5 months. So ask for a referral now if you think you'll need this, as you might have a long wait too.

I cannot recommend highly enough applying for a Statutory Assessment from your LEA. I applied last July and the process took 6 months (which is quick by all accounts) and so DD2 now has a Statement of Educational Need and has a 1:1 Teaching Assistant paid for by the LEA for her starting nursery (attached to a primary school) in september. The Statement has opened a few doors for us. On the financial front, it's worth considering applying for DLA and checking if you're eligible for Carers Allowance, if you've not already done so. Every little helps :)

Sorry if any of that was teaching to suck eggs…. :)

No, very helpful, thank you. Will have a think about everything you've said. Hope your dd continues to improve, sounds like you're doing a great job for her.

ShakkaKhan, just read your other post. You are not terrible for going back to work. Most parents do. I have guilt about staying at home - we mothers are always in a 'no-win' :) And it's perfectly normal to wish your child was meeting typical milestones and being able to run with their peers. Don't beat yourself up x Comparing with other kids is a killer, please try not to (we've all done it) and it really is painful :( . Have you got some equipment from the OT and physio? Like a Jenx corner seat, a supported high chair, a standing frame or a kaye walker? We've had all of these but only have the highchair now. Be kind to yourself x

Thanks x no equipment, no. The last physio recommended a wedge cushion which we bought, it helps his posture when he's sitting down. Will have a look at the items you mentioned and see if he'd benefit from any at Fridays physio session. Last time they strapped him into some ridiculous crawling machine/tray which was dreadful. A skateboard would have been better

Totally agree with everyday about the work 'thing' - you feel guilty whatever you do. But I think working can help to get a little distance from the situation and to occupy the mind - especially when you are feeling down. I managed eventually to go back for shorter hours at work and only needed childcare quite briefly but DD really thrived in childcare. Some days were pretty hard as trying to put your full concentration into a job when you have a paed appointment on your mind is tough. Hopefully your employer is supportive though - makes all the difference.

The comparison with peers is hard (was doing this only yesterday with DD and her friends). It's impossible not to but does make it all the more amazing when they do meet milestones or achieve something new.

Good luck with the physio!

Concur with itsnothingoriginal, DD2 has also really thrived in childcare. Improvement across the board from social skills, mobility, balance and speech. Please don't feel guilty xx

That's good to hear, thank you. Six weeks in now and he now seems to be enjoying it, chatters about the other children when he comes home and always smiles when he sees the CMs (there are two childminders working from the same premises). He does seem to be getting better on his feet, is falling over a LOT less. I have asked them to try and make him crawl like the physio said, and showed them how, but i dont think they really do. I'm not sure how much more I should expect of them, the other two year olds they have can obviously walk etc and are much more independent. They are lovely ladies and seem to care about him, have been very accepting when I've asked them to do certain things with him to help him out but I dont know how much I can and should ask of them. After all, it's easier for them to either let him sit and play or bring him up to standing so he can cruise.

This is where our statement is invaluable. Our childcare nursery provides a set about of time for physio and SaLT and specialists have gone in to show them what to do, how, and how often. Also the nursery have written an individual education plan (IEP) comprising 3 targets, which is reviewed at a meeting of all concerned (parents, OT, physio, LEA etc) every 6 weeks. Our statement is worth it's weight in gold and enabled the local authority to release funding to the nursery for them to have an extra member of staff to provide 1:1 to look after DD2.

I'm glad your DS has settled in well to his childcare. I think having kind childminders and a happy child who is confident to be left in their care is such a weight off a parent's mind.

Hi all and welcome shakKaKhan

I'm pretty new myself and still find a lot of this daunting. Don't beat yourself up, its not worth it. You are doing everything you can for your ds.

Hi albaba great to hear your dd is walking while holding hands. She will be building her strength in her legs each time.
I don't know about her splints but could you maybe 'decorate' them with her, stickers etc. Maybe let her play with them so she sees them, holds them etc so they are not new to her. Sorry if you have tried this already.

We had our first app with new paed last week since moving. I'm a little confused now. Our last paed was really involved and wanted to know everything about dd. New one took details of dd and said
" you won't need to see me often, I'm here to liaise with other departments like physio etc, and for referrals so I will see your dd in about 6 months time "
So what is the paed for? I'm really confused.
We also had very first app with an OT, dd did not really like it. The more we tried to put toys in her R hand the more upset she got. OT is coming to our home to observe her here. Here's hoping she is more relaxed :)
I read on here all the time about a stressed cp child is a tight cp child, and I'm realising now just how true that is.

I eventually filled the DLA forms in, about 8 weeks ago, we got a letter nearly 6 weeks ago saying thank you for applying and will take about 8 weeks to make a decision. Yesterday I get a TXT saying we have awarded your child DLA. You do not need to contact us.Is this how they let you know? The txt didn't have a number but DWP as the sender. Is this right?