support/information sharing thread for parents of children with Cerebral Palsy

[inhibernation]

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA

Ah, the Bieber.

Dd1 came home the other day enthusing over her math class, where apparently they had been watching you-tube clips to learn Pythagorean theory. (as you do)

Apparently one of them was to the 'baby' soundtrack, so all I had for freaking hours was 'a squared, a squared, a squared, plus b squared, b squared, b squared, equals...' it made a change from 'baby, baby, baby' I suppose. But became equally repetitive.

Hope she had a lovely birthday! Dd2 was beyond excited, and went to school clutching a huge Tupperware box of cupcakes. There is no actual way they will survive the journey, what with the bumping and crashing and wobbling, but she was so chuffed it was almost worth hearing them in the kitchen at 6.30 am wanting to help ice the damn things.

DD has a Wii fit whatchermacallit with the balance board (5 minute wonder with her of course) and you have got me thinking (lightbulb) as DGS is such a tele addict. I'm very inventive re the little tyke so will look into this next week.

Happy happy birthday little mad -ddy! xx she's a bit of an inspiration for us, (bought trike as you said it all took off from there ) Pity there isnt a Wii trike! Think the walker and stander are rifton. Funnily enough he walked better and more willingly on the ancient tiny rifton gait trainer I bought on ebay - he's just not happy in the new bigger one...got to try more though. Autumn has well and truly drawn in here in soggy england, think the sun only shined on the olympics and paralympics, giving the false impression that england actually had a summer

Will give the shopping mall a bit of thought as we dont want a repeat of the struggling to get the trike in the car and of to the local lake/park where DGS wailed and protested and hated his beloved trike! He doesnt take kindly to new experiences. Our hydro sessions have ended, supposedly because of too many children on the waiting list and local pools not as warm and busy during the school holidays Have also emailed several times to local RDA and filled in a form but not heard anything back but will try AGAIN

His bonkers wizzybug has arrived though and he loves it....it doesnt do much for his physical development but is such fun!!!

DD been today for scan of new tadpole and all looks OK so she is happily showing off tadpole photos. To me they are creepy but thats just me

Ooo, I didn't know! How lovely!! Is she okay, or freaking out silently?

Fun is good. An absolute necessity. Not everything has to be therapy.

Dd is nauseous, tired, fed up with sickness (none with DGS) but happy that her 12 week scan looked good but waiting for blood results still. She works in ICU and they have an ultrasound machine and she keeps checking on the tadpole. Yesterday it was doing handstands. I am very yuk with the freaky pictures but she's happy lol. Will be demanding a CS before the due date and will be closely monitored.. Basically she cant be bothered with much at the moment especially as its monsoon season here again and the central heatings gone on again she hopes the next 3 months will be better before the lumbering elephant phase begins. She is very pleased but scared a bit too. I think this time will be fine but she had a mc in the past too so all understandable.

So pleased with the little monkey today. We were doing the gym ball exercises (loves it) and after individual legs kicking the ball when he's lying on his back, tried a variation and he kicked it with both legs, like he was riding a bike in mid air. Doesn't seem like much but he NEVER brought his legs up together before and it looked such a normal motion and was so easy for him. Convinced its the trike! Will go out when it's dry next. Also making him take steps up the stairs. Tried to get him to crawl them but he is too tall.

How can he be too tall? Dd2 still crawls stairs half of the time! just put his hands up higher. great that he's enjoying some of the physio stuff - makes life much easier!!

Great that she's past 12 weeks, too. It's all such a long time to be on tenterhooks though, v stressful. You'll have Christmas to distract you soon, anyway

How exciting for your Dd sneeze!
The wizzybug sounds great fun too. YY to turning therapy into fun.

little monkey prefers to walk up Likes to keep his bum stuck out rather than tucking in which would make it possible to crawl up the stairs!

DD and I are not Christmas fans - very bah humbug!!!! But will try for the sake of everyone else. Oh and now the backache too and sciatica. Not helped by 12 hour shifts on her feet

Can see more helping from me for the next few months lol - will I ever get a life.

Hi everyone
Nothing particular to say but I have a special interest in this thread because I am an adult with CP and have posted a little on this site regarding other topics. I can identify with everything you have said especially around physios . I go swimming a lot as a form of physio because my physio stopped at 16. Also use a personal trainer.

Now have a job, my own business and live independently with careers helping at key points of the day, although I sometimes get down about my disability because there is no spontaneity , because I have to plan everything. Even my food now because want to loose some weight.
Good luck to you all and your children x

Hi gem! lovely to hear from you, and thanks for popping by! Do call in and offer your wisdom if you have time x

Well, I thought I better join you lovely people as a regular now. Thanks to your wonderful tips, ds2 is doing very well.

We had his paed appointment couple of days ago and CP was more or less confirmed. The paed still would only say that it is 'likely' that this is the cause of his stiffness but wouldn't confirm it just yet. I have bought the books you recommended and started him on Physio for at least couple of hours a days and will send him to swimming pool couple of times a week for his stretches to replace the hydrotherapy we have missed. He was also dx with GDD so we have started to work on his cognitive skills as well. Is there anything else we need to watch out for.

Thanks for your help. I hope to get to know you well.

happy birthday little mad and little shopping. I may also be heading towards getting ds an ipad, am fed up with him pinching all my electronics.

welcome gemblags, lovely to hear from you.

And dev9 very glad ds2 doing well and you are making progress and have a tentative diagnosis.

one quick question for everyone knowledgebale, anyone got any idea where to get second hand equipemnt from. i am particualrly looking for a rollator as the NHS won't supply as they think DS should persevere with his kaye walker, but he can use it and chsoes not to and I can't balme him, and it is so much easier for him to crawl. we thought the rollator may work better, one physio agrees and we are sure we want two walkers anyway to save the faff of transporting to and from nursery so DS gets used to the idea he uses the walker at home too.
I am getting a bit of a runaround from quest88. Any ideas?

Hello Gem. ditto with the useful gems - we are all stuck around the kiddy mark!!

Hi also dev9. Glad you have got some help here, it's what its all about so really good . Does DS have stiffness in his legs and possible spastic diplegia (related to prematurity generally)? ipads are good for cognitive skills and it seems to be the trend on here

thereonthestair. I have had some real bargains from ebay. But its again hit and miss. Had a rifton gait trainer, a rifton corner seat and a lovely quest88 trike, all used but real bargains. I've had to travel sometimes because often the items are too large to courier but it was worth it. Type in special needs. (none at the moment though) I think special kids in the UK (SPKIUK) have a used equipment section.
here is a pretty cheap one but it depends on what you need.

There, he needs an r82 crocodile.

We had the same, but in the end physio arranged for the rep to come in, and dd2 was soooooo much more agile with it, so it was funded. The Kaye was really holding her back. I don't think they come up second hand very often - it would only be the luck of the draw with a returned piece of equipment Or ebay, i think.

Have you thought about pursuing through a charity? I would think it would be more likely than finding a second hand one in the right size. You could always ask the LA, but tbh, they don't like to double up on eqt...

Oh, I'd forgotten skinuk. Good point - it would be luck to find one. Not impossible!

Sneeze I have no idea, will have to ask dw about it, I don't think she mentioned what kind, she just mentioned it is likely CP but wouldn't Confirm it.

He has stiffness is his legs from birth. We really properly started the Physio in the last two months or so and he has def improved. He has recently started to try to crawl and he loves standing with support. Even tries to take a few steps, but he has no sense of balance whatsoever.

We were given this link by the paed to monitor his progress, developmental journal so we are using that to keep an eye on him.

He is only 10 months, 7 months corrected so I think iPads are some way off yet.

Dev9. Read an interesting piece of research a while back that in a study of infants 'diagnosed' with CP under one year, by the age of around 7 50% of them showed no signs of CP at all! Unfortunately DGS wasnt one of them but lots of babies can go on to develop normally because of the brains neuroplasticity.

Thanks sneezecakesmum. I am really sorry to hear about your DGS. DS1 has ASD and was dx last year. We started ABA expecting success stories like some of the others have witnessed, but the progress has been really slow, so sadly I know the feeling of initial optimism drain away slowly. I should say that ds1 is doing better but no miracles here. so we are keeping our fingers crossed with DS2 and trying very hard not to get our hopes up too high. It will be what it will be.

He is getting all the support he needs and more and the initial signs are good. If I am really honest I do feel a little bit of a fraud posting here because I haven't really gotten round to the idea of him having CP. We were prepared for ASD dx but CP really did took us by surprise. He has been seen by two neuro paed now so there is no denying it but I would like to bury my head in the sand a little longer. I am not even sure I am even making sense but writing about it sure does make it real.

Hello again! I have been somewhat busy lately so haven't been on - sorry!

DD went for an initial appointment RE SDR in Bristol and Mr Aquilina felt she would benefit and put her forward for full assessment. We are applying to Gloucestershire for funding but aren't holding our breaths. In fact we're already fundraising and have raised nearly £7000 since mid August.

We're also applying for Statutory asessment to try to get her extra support within both playgroup and as she moves up to school. Heard today that they will carry out the assessment, so fingers crossed it'll all work out!

Really well done Galena with the fundraising. Amazing amount! Hope the other funding happens, must be awful with the uncertainty. How much do parents expect to pay towards the cost?

dev9. Its awful getting an acceptance of any diagnosis. You just want to KNOW what will be in a few years and if progress will be made. Its the uncertainty for us that was crippling. All you can do is carry on regardless because every bit of input supplies a bit of their missing jigsaw and even if you dont see imediate results you have to have faith that it will come together in the end. The first few months are very difficult, but realistic optomism is the key to retaining your sanity

The assessment is £800, the op is £23500 and the physio after is about £15000. If you're lucky the NHS trust will pay some or all of it. If you aren't lucky, and we are likely to be unlucky, the NHS trust will pay nothing. We're raising £40000. Madness!

Dev9, we tried to view the diagnosis as a positive thing. DD was 2.2 when we got the diagnosis of spastic diplegia (She was born at 27 weeks...). We found that once we had the diagnosis we could apply for DLA (and once she was 3 we could apply for mobility too), we got a referral to wheelchair services, OT, orthotics, orthopaedics, etc. She had Botox soon after her diagnosis which relieved a lot of the tightness. We're now almost exactly a year post Botox, and would be starting to consider another round of Botox except that we don't want any more before her SDR assessment.

galena. OMG - what more can I say!

Yep. :)

We aren't getting cross about it though. The NHS saved her life when she was born. When you consider consultants, nurses, incubators, ventilators, transfers, etc, the NHS has probably spent the best part of a million pounds on her so far. Yes, it's gutting that some places will pay and our trust won't, but that's the way it is so we just need to get on with it. We're up to nearly £7000. :)

All I can say is good luck with the fundraising

I think in the future SDR may become more widely funded if the end result is a child who will ultimately be more independent and so cost less to the NHS!

You will get there Galena. We are in St Louis at the moment DD had SDR on 27th Sept. We were accepted for Bristol but were offered a cancellation for St Louis.

Certainly in Scotland SDR is much more widely recognised and will be a "mainstream" treatment for diplegia if such a thing exists in the next few years.

Thanks. :) I'm amazed how generous friends and relatives are!