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

everyday if I were you I would look into which charities might fund a trike, or contribute to one based on your income. It is for the charities to set the rules but in my experience very few will fund completely, many take months but smaller organisations such as local lions clubs, rotary etc may offer a bit. I also wouldn't feel guilty at all. Ds trike cost £2350, his wheelchair £1900. that's on top of the other direct costs I can attribute to ds disability which are usually about £10,000 a year I refuse to feel guilty about asking for £250 or so from charities. Yes there are others who may have greater needs, but charities fund greater contributions to those less well off than I am, and so they should. But given even after DLA cp costs so very much, if you do qualify for charitable funding go for it. Just chose who may fund carefully and if there is a means test, respect that for that charity, others may have greater needs.

Everyday I have also had similar thoughts re claiming for things. But I think that overall, the fewer people claim for things like this, the less the charities and the government/the charities' donors think the service is required. So, in fact, by claiming for these things you are helping to ensure that more and more families down the line may also benefit.

Thank you guys for your responses. I have to admit the price you quoted where is a smidgen more expensive than I was expecting lol and I would feel happier, as you have said, about the the charity perhaps only donating a proportion of the cost. That helped, thank you where and babs x

Hi everyone, sorry i havent posted in a while - hope you are all doing ok.
Sorry this might be a long post and full of questions.

DD is doing ok, still havent been able to use the walker outside much as its still very cold here, but we took her out to a local park on Sunday and she loved walking there, but got tired very quickly and then refused to walk back without us holding the handles of the walker!
We had lots of stares and people with dogs not on leads running up to DD which i wasnt happy about.

We start SaLT sessions tomorrow after having an initial assessment. Its a block of 5 sessions - half hour each.
Has anyone seen success with blocks of speech therapy?

We had a referral to Orthapedics. The consultant was very positive. He said she is doing well, has good range of movements in her joints, her gait pattern is good and hips seem fine. Then we went for a hip xray and got the results straight away.
Well, her hips are not fine. The consultant said its to do with the way the skeleton has developed - not caused by the spasticity/tightness in her legs.
I didnt get much out of him, he was quite vague, but i am assuming its because she hasnt been weight-bearing a lot, mainly because physio discouraged it until she was sitting/crawling.
He said to continue with standing/walking practice and they will monitor it.

Has anyone else had hip x-rays with abnormalities?

For those of you who kids are in mainstream nursery, what equipment do they have there?

Does anyone use a stander at home and how long each day for?

Has anyone been to the Bobath Centre? I'm thinking of fundraising for a intensive block of therapy.

Everyday - have you looked at other trikes apart from the TomCat? I'm currently deciding between the Tomcat Tiger and the Quest 88 Kitten. I've heard positive about both. We are going to the Kidz in the Middle Exhibition in a few weeks to test them both out.
Some charities do look at your income - I've found this an issue as both my hubby and I work.

Hi Red nice to see you again :)

SaLT.

DD2 has just finished her second 6-week block. I sit in on all her appointments, and tbh it doesn't look like rocket science. BUT, it has made a massive difference, perhaps the therapists just make it look simple lol. From not being able to make an intelligible word a year ago, DD2 (age 3Y 9M) is now quite chatty and successfully forming whole sentences. I find it very frustrating that after the block of therapy, we then have nothing for 3 months and then she has another review to see if further block of SaLT is needed.

Nursery.

DD2 was in a private mainstream nursery last year. As she had a statement, the nursery (and DD2) was supported by the local government run Birth-to-Five service and they funded a member of staff for the nursery to provide 1:1 support for DD2 for 15hours/week. Birth-to-Five also provided a support chair to enable DD2 to be included in table play and meals at the tables. The nursery wrote her Individual Education Plan (IEP) and hosted a meeting (of the Nursery manager, key worker, parents, Birth-to-Five, OT, physio and latterly the SENCO of the primary school as we neared transition) every 6 weeks to review it. The IEP was an agreement by all parties on 3-4 achievable and measurable targets for DD2's key worker to focus on. So we worked on about 3 targets every 6 weeks. Furthermore, our OT and physio visited the nursery every couple of months to review DD2 and to provide DD2's key worker with guidance on exercises to do and recommendation of any support that was required.

DD2 is now in a nursery setting in a primary school, so the LEA now provides the support, rather than Birth-to-Five. In this nursery setting, she has everything as detailed in her Statement. SaLT, OT, Physio all go into school; she has a support chair for table work; I supplied a wedge cushion for floor sitting; she has access to the disabled toilet facility in her class and this has been further adapted by equipment bought by the school on the recommendation of the OT; and the school is about to buy another support chair suitable for DD2 for taller desks in other classrooms (IT suite & dining hall) on the OT's recommendation.

We have been very lucky that paediatrics support in our county has been fabulous for us. But I am certain that much of the education support is down in no small part to having the Statement, which seems to unlock the funding.

Upi Standing Frame

We had one for about a month and were recommended to use it as much as possible. DD2 really didn't like it and we had more success putting toys on the sofa and getting DD2 to stand leaning against the sofa as she played. If she managed an hour per day at the start, that was really good for her. The time will probably differ from child to child depending on ability - I'd ask your physio for advice.

Thx for your advice re other trikes and Kidz in the middle. I didn't know about this, but I want to go now. Have asked DH if he can get the day off as I too would love to directly compare the Tomcat with the Quest - what a fabulous opportunity. Thanks for telling me about Kidz in the Middle (might bump into you there, although we'd never know lol).

I typed a long reply last night then lost it. So here goes again.

xray ds has abnormal hips. But most cp children do, and there's normal abnormal within cp. Ds legs don't go straight down from the hips, there is about a 20 degree angle but within cp that is not too bad and doesn't itself require further intervention, but they will repeat the further xray regularly. The ball of the joint is also flatter than normal due to him not weight bearing. That will apparently improve with time. The key issue is to keep an eye on it.

nursery. Ds went to a mainstream nursery for 4 years. He had 1-1 funding from the early years team. By way of equipment we had:

1. A standing frame for about 12 months between the age of 2 and 3.
2. A therapy bench for the staff to stretches on, (and change nappies before he was toilet trained.
3. A heathfield toileting chair when he was toilet training.
4. Various kaye walkers
5. Tripod sticks
6. They put a ramp into the garden so ds could walk down with his kaye walker
7. Rails up the stairs
8. A rail by the front door
9. A rail at the front door

1-6 were provided by ot services, the nursery did the rest.

We also had Ieps with targets both physio and ot with different timescales. Ds didn't always hit them but it meant everyone knew what we were working to.

salt Ds has had some blocks of salt, but tbh his speech is borderline ok, so we didn't see much difference tbh, and the nhs don't fund much.

stander we had one for about a year when Ds was about 2. We started with him using it for about 20 mins, gradually building it up to an hour. He used to watch cbeebies. He used one in nursery for about an hour a day too. He has one again now, and we are now aiming for 45 mins 3 times a week.

bobath. We have been there for intensive therapy. It is good but not a magic wand, so if you go to them expecting a miracle it won't live up to expectations. Also they expect a lot from parents afterwards which I don't think is realistic especially if you work. However intensive physio can be good and it is beneficial if your child gets stuck... It does also cost a small fortune and I think it is important to take a view that you may not get what you want out of it. I may go back sometime, but it is very expensive for what you get so I would only go with my eyes open, and to be honest if you can get private physio locally I would use the money for that. We went when our local provision fell apart just after Ds was 3.

On the trike please check that both tomcat and quest will be there. When I went to kids South quest weren't there. However both tomcat and quest will send a rep to you and let you try their trikes, as well as give you a quote so you can compare directly without charge. Ds found a tomcat much better, and in my opinion they are much better designed, but I know others feel differently. Also while I don't regret going to kids South there was far less of use their than I expected tbh,although that said I did start talking to the wheelchair company as a direct result of talking to them there. Also once you have tried them look out for them second hand as they are often available and they rarely break so the second hand ones can be very good value.

Thank you Where

Woo - cp thread!

For those of you that don't know me from Adam, dd2 has athetoid cp (originally dx spastic quad, re-dx at 4 after second MRI) and is 11 now. She wasn't expected to walk or talk, but ignored all that and does both. She used a standing frame from 12 mos, walking frame from 18 mos (originally Kaye, then r82 croc) and eventually stopped using the walking frame in between yr r and yr 1. She skis black runs and is in an adaptive downhill race program, with delusions of the Paralympics...

Red fox - dd2 had baseline hip x-rays taken apearly, with the typical flatter socket presentation caused by lack of weight bearing - they then repeated hip x rays annually to keep an eye. Hers improved with weight bearing.

She had a frame at home, and separate frames at nursery, so that I didn't have to transport. When she started school, the OT carried out a transition accessibility assessment and they adapted everything from the height of the soap dispensers in the toilets (plus toilet frame on one) to ramps, handrails etc. She had 1-1 throughout nursery, and 15 hours 1-1 in school,(for both physical and communication) which we agreed could be shared with another student (VI with 15 hours) to provide 1-2 support full time for both girls. (Always mainstream - she has a higher iq than her paed lol)

She had a kitten (tomcat were reasonably new but having issues with their chroming) and loved it, but we tried about five different types. She now has a trailmate low rider, but it weighs a ton. Dh claimed he was going to teach her to ride a two wheeler last summer. I think he bottled

Anyhoo - it's lovely to see this thread thriving!

Dd2 takes her RAD grade 2 ballet exam next month. She started ballet at 4, before she could stand independently, and used to hold a chair in the class to stay upright

Now I'm going to scroll back and try and catch up with everyone!

Oh forgot. - re SLT, yes huge improvements with blocks of therapy. Dd2 didn't speak until around 3 and was very dysarthric (still is, but not so much)
We had the most succes with the Nuffield verbal dyspraxia program. She went though a few of the mouth aerobics type programs, and all of the licking, blowing etc, but it was the Nuffield program that helped with her clarity the most. For the first three years she had SLT access all the time (regular weekly therapy which started with specialist feeding SLT then feeding and communication group from 6 months old)

She was four before we realised she had no lateral tongue movement. It explained a lot about the feeding problems She was tube fed to start with, (she had her first SLT before she left scbu) and she has had speech therapy constantly in blocks until about 7yo, then odd blocks here and there. She's currently having her first block in ages, for a clarity top up. We were told that whatever you have by around 8yo, is pretty much the way it will be, with oral motor issues caused by neuro issues. Hence not so much therapy after 8, but she can improve clarity herself by remembering to use her lips, swallow, and concentrate on her speech instead of gabbling at a mile a minute.

Hi again Madwoman nice to see you again .

I related to much of what you have said about SaLT - especially swallowing and gabbling lol.

Enjoy your thread catch up [tea] . I've just dipped back in after being away for a little while too - I think most of us do this. It's nice when folks pop back in to say hi, and we especially appreciate hearing from the parents of older children with CP, so we have some experience on the thread and some rays of light about what our futures might hold too - you all have such inspirational stories. I wish your DD well in her skiing; that's fantastic news x

smiley fail lol

Hi everyone,
I just want to say WOW WOW WOW - thankyou all for your advice, help and inspiration - its really cheered me up

Apologies long reply alert

SaLT

Everydayaschoolday - I'm sitting in all the sessions too (hubby went to the first one yesterday and i got him to take notes lol)
That gives me so much hope, it sounds like your DD2 has come on leaps and bounds.
From what i understand - ours will be similar, we will have a block of sessions then it gets reviewed to see if we should have further blocks.
I am debating whether to get a private SaLT maybe once a fortnight, just to bridge the gap so to speak.
madwomanbackintheattic - I'll have a look into Nuffield verbal dyspraxia program. I'm unsure if DD is just a delay because of the brain injury or a processing problem.
She was tube fed in NiCU and discharged with poor suck but that resolved itself.
The words she has are clear (only about 20), she babbles what sound like sentences, she tries to sing songs (it sounds like a tune but mostly babble), we've not had feeding issues (slight delay in things like lumpy food, feeding herself etc), she does lots of things with her mouth - blowing raspberries, blowing kisses, lip rolling with her fingers, she even whistles sometimes.

Nursery
Everydayaschoolday - We have Early Support involved which sounds similar to Birth-To-Five.
Early Support are telling the private nursery to access a Crisis Grant for 1-1 support. SaLT told me that nursery should be contacting Education (Specialist Teacher Team), so i a little confused.
We had our first TaC meeting (Team around the Child) in December (which sounds similar to your meetings - with nursery manager, key worker, parents, Early Support, Physio, OT) and due the next one in May.

Physio mainly visits the nursery to go through exercises, mainly as ive pushed for her to do that. DD has a specialist chair at nursery but thats all.
I think she may benefit from a stander there (she is there 3 full days), and in the future a toileting chair.
I'm happy to supply nursery with a peanut ball/physio ball as physio have suggested to start using this.

Everydayaschoolday - what benefits come from the wedge cushion?

whereonthestair - thankyou for the advice about the ramps and rails. Thats not something i had thought of much, but i think may be useful to bring up in our TaC meeting.
I normally have to take the pushchair round to her room which is not the easiest thing to maneouvre through the doors, mainly because if i fold down the pushchair at the front doors, I've got to take DD out and sit her on the floor. If they had a rail there, i could easily get her to stand holding onto the rail. Sounds kinda cruel when i write it down, but she is at that stage where she wants to do everything herself (putting on coat, shoes etc) and i think she would want to be able to stand there and then i can walk her to her room.

Standing Frame
Thanks everyone, she has become more tolerant of this recently, so thats good. Since the hip xray, I've been putting her in it everyday for at least half hour.
She can do about an hour in it if we keep her entertained.
I spoke to the Physio and they said that half hour a day is fine, and if we can manage an hour then thats even better. If she tolerates that, then at weekends we can always do an hour in the morning and an hour in the afternoon.
Now the weather is getting warmer we are going to take her outside in her crocodile walker to the local park at the weekends.

Trikes/Kidz in the Middle
Everydayaschoolday - might see you there! This will be our first time going, but i just thought i would see what its like. It may be something that we go to only once, but we thought we would give it a try anyway.
I've got a tendency to jump in and buy things straight away, so i thought this time i will try out the different trikes first and have DH there to ask the technical questions lol
whereonthestair - I've checked and it seems both Quest and Tomcat will both be there, and if we dont get enough time to test the trikes or ask all the questions then i will ask the reps to come out.
I've got my eye on both a 2nd hand Tomcat and Kitten - both really good prices, just was worried about jumping in and buying either one until i had tested them.

Hips
whereonthestair - thankyou for your advice, thats really helpful, and has put my mind at rest.
I think it was because all along I've been told by everyone that her hips are fine, so it was a bit of a shock.
DH took her to physio yesterday and she said the same as you have.
madwomanbackintheattic - thankyou also, i think hearing from other families has settled my mind somewhat. I was really worrying that she might be in pain with her hips and cant tell me, but she doesnt appear to be.

Bobath
whereonthestair - thankyou, i think that was my interpretation of it to be honest. We have a very good private physio nearby and DD went for an assessment in December. They gave us an exercise plan and didnt feel she needed any further intervention until she was a bit older. They said we could happily go back in 6 months for a review if we wanted to.
I think perhaps we will see how she is doing in the autumn when she will be nearly 3.

madwomanbackintheattic - Your DD is an inspiration!! Wow - skiing and ballet! It gets me really excited for DD's future!

red keeping it short as I'm on the phone app thingy and difficult to type lol. When DD2 sits on the floor for carpet-time at nursery, her back curves and she sits with haunched shoulders. Put the wedge cushion under her bottom (thin part to the front and thick part of wedge at the back under her bottom cheeks) and her hips tilt slightly forward (imagine sticking your bottom out further behind you) and her back straightens up. So it improves her posture. It's just a wedge of foam covered with a blue waterproof plastic cover, cost about £16 from a disability products retailer online. X

This one from TTS £19 :)

www.tts-group.co.uk/shops/tts/Products/PD3029722/PosturePad-Junior/

Thanks everydayaschoolday - i might look into that

Oh i meant to say - this might be of interest to some of you.

SDR surgery will be covered on the NHS programme on Channel 4 on Monday evening at 10pm.

Albaba, I just wanted to reassure you about dd as well. Dd2 also seemed to be less able to deal with her emotions than an nt child - I think it's less tantrum than becoming 'locked in' to a wave of upset/ disappointment/ whatever the trigger was - it was definitely harder for her to re-set the emotions or be distracted than an nt child. Over the years we have had to cancel a family outing to the circus (she was hysterical for three hours because she was overwhelmed by news of a forest fire that had destroyed a town), I've been called in to school because they literally couldn't understand her and she was so upset (after an hour or two it turned out she had found a pretty leaf in the playground and wanted to give it to me, and was sad because she couldn't) and all of the 'usual' toddler triggers such as stuff being cancelled/ routine being changed etc etc. we also went through many years of trauma every time a year end rolled around at school. I would usually have to wait until everyone had gone at the end of term and then peel my hysterical dd off whoever she was attached to - she would by then have reduced every staff member in the vicinity to tears...

It IS hard, but a lot of it is almost a 'good' sign - reacting to the environment, a reasonably normal reaction in a toddler/ pre-schooler, but just seemingly 'stuck' in the emotional vortex, and everything being heightened.

It does get better. Sometimes there is nothing to be done but pick up up the child and leave, and carry on as normal until they can 're-set' (nicely, kindly, but firmly - acknowledging their emotions but not encouraging them lol).

And most of all being kind to yourself. Don't ever feel embarrassed - little kids have meltdowns all the time - it's really hard - but just do whatever it is you need to do - you will get to the point where you can recognise both triggers, and whether dd is truly overwhelmed - in which case you can try and head off the cause (we avoided the news, or anything potentially catastrophic for a few years) and know when perseverance isn't going to work and so to make your exit

As an upside - this level of emotion as a little one has left dd2 with a huge well of empathy, and she has an enormous sense of justice. Two years ago she intervened on a school bus where two boys were bullying another boy - she just literally couldn't sit by and be aware of the way the victim was feeling and not react, so she stood up to the bullies. Of course, when she got home, she had a wee meltdown of her own (really a stress release and needing to be reassured she had done the right thing as she was worried she would be in trouble with school) but she knew she had to help someone who was struggling. School were great about it, and discussed with her some ways she could have protected herself as well as doing the right thing - but she's a brave little gal.
Mostly though a regular toddler tantrum is a good thing in a kid with cp it doesn't feel like it at the time, but it is a completely normal developmental stage, and so should really be celebrated even though it is murderous to deal with. Kids with cp can be absolute pains in exactly the same way an nt toddler can - and you shouldn't feel guilty about thinking they are, lol. You just have to watch for the extra 'locked in' layer.

Oh, and dd2 also cried for three days because her imaginary friend left overnight. I still don't have any idea how you are supposed to deal with that...

Hi all,
I hope you all had a good weekend. Sorry for all my posts...

DD was doing well with her Crocodile walker but now she decides to lean on the handles and propel/drag herself along. I'm feeling really deflated by this.
We tell her to stand up straight and she'll do it for a few seconds then start leaning again.
Hubby thinks it will come with time and understanding - but i really wanted to focus on using it through the summer so she could gain some independence.

everydayaschoolday
I've just contacted TomCat and they wont be at the exhibition after all. They've offered us to stop at their offices on the way back, but i dont think we can fit it into the day.

Hi RedFox thanks for letting me know. DH is away on a business trip so we can't make it anyway . On the up side, Tomcat assessor is coming on Friday to measure DD and capture her requirements. I'd love to have the trike by her birthday in June .

6-10 weeks for manufacture according to the website, so the birthday should be well within reach tomcatspecialneeds.co.uk/assessment/

Hehe just ordered these as a birthday surprise! www.stickerfxgraphics.co.uk/wheelchair-spoke-guard-skins-frozen-elsa-olaf-bulda--custom-designs-personalised-21950-p.asp

Everydayaschoolday - ooh exciting! I hope the assessment goes well, let us know.
Hubby has decided that we should stop at their offices on the way back from the exhibition to look at the trikes, so hopefully they can fit us in.

SaLT
Has anyone experience of this?
DD will copy words after i say them one by one, ie: "Daddy, Mummy, Nanny, Baby", but if i get to a word she hasnt said before (even though i have repeated it many times before) she just says "Yeh".