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

[JackTheNipper]

DS does (less now than he used to) fixing, ie when he was in a sitting position he would fix his arms backwards (imagine flippers) to balance himself, since his core strength has started getting better (lots of gym balling) he has stopped doing it so much.
With walking in his pacer, he has to think about which leg is going to move then he tightens up but then relaxes to move is leg, it looks quite strange but I suppose it's just the way he works and I'm hoping that when he gets more used to walking it will come more smoothly?

[inhibernation]

Blimey - a flurry of activity!

Haka - so glad to hear that dd goes to a good school and that they are fully inclusive

Sneezecake - the issue with ds school is access. I've been in talks with the school, who are keen to help but there is no money for a ramp to serve the play areas. Not giving up yet though. It would be awesome if dd could go there because she already thinks it's her school and all of ds mates would look out for her.

Madwoman - like your dd, my dd's tone becomes high when she moves. Dynamic tone.

Slowburner - dd has a very positive private PT and I am so grateful in a way that we were forced to look to private PT before getting into the system - because when her new NHS PT delivered her rather negative prognosis, I was grateful that there was another opinion we could seek. New PT told us that dd is probably never going to be able to walk to the shop to buy a loaf of bread but might move around the classroom one day - and that the "good news" is that because dd has good upper body strength, that she'll be a good wheelchair user. I was - I think I'd have preferred a punch in the face.
It was so much harder too that we heard this from someone who had only seen dd for 5 minutes.

Soooo, guess what dd did last night..............she got out of her chair, walked about 5-6 steps independently, changed direction, then walked a further 5-6 steps. We had to drag our chins off the floor! So amazing to see Still buzzing actually.

[inhibernation]

By the way, we are using a power plate for dd. There is some evidence base apparently. Who knows.............could well be making the difference.

[Tonicwater]

I see some of the talk has been about schools and physio. My DD is 18 and was very lucky. My DD went to ms schools that had support units for the physically disabled attached. Her physio was timetabled into her school week. At secondary school they had a hydro pool and as well as physio, hydro lessons were weekly timetabled.

Now she is at a residential college for the disabled and has physio and hydro there. She also has driving lessons in her powered chair.

[Tonicwater]

When I said driving lessons I mean she is learning to drive her powered chair. :)

[intothewest]

Have been skim reading- DS's physio was pants for ages,but he's just had a good period in school.Now she's going on maternity leave....which is lovely as long as they get cover this time walks off muttering 'if you want something doing' I do a lot of therapy at home.I do it straight after bath time.

DS has started to do an odd thing.When he is walking his leg wil suddenly shoot out in front of him and he falls down, Any ideas ?

[hildathebuilder]

Oh I feel so lucky, My ds physio is NHS and amazing. Always positive, if realistic, although I know Ds is still tiny, she has never given up hope on anything, and is currently scheduling in weekly physio where she and a clleague who later wants to specialise in CP spend up to an hour going through things with DS. We also have a private physio from time to time but that is more for us.

She tells me that the physio is mainly because Ds is learning to walk and she wants him to do it in the best way so she's throwing the book at him now.

In respect of inspiring people with CP I know of/have heard of/have met many. My current role model is a student at a very prestigious unversity who decided that come what may CP (spastic diplegia) would not get in the way

[survivingsummer]

inhibernation - fantastic news!!

intothewest - hi! Does your ds do that a lot? Just cos dd sometimes just loses her co-ordination when walking when she's tired - like her foot has just gone iykwim..

Haka

[intothewest]

SURVIVING- Yes he does it a fair bit. When he's tired he falls down ,but the leg 'thing' is fairly new.It's as though it shoots out by itself !

HAKA- no guidelines,but you sound as though you're doing a good job

[sneezecakesmum]

Inhibernation. Well done little DD that is fabulous news. Don't ever listen to the experts, especially doctors, I think they take lessons in doom and gloom! These children amaze us every day, and every week we see something different, something encouraging, just the hint or a normal movement or stage in their development. Its really slow compared to NT toddlers but it is SO worth it!!

Mild SPD children lead pretty normal lives, they may need botox or even tendon release surgery in the future, but these interventions enable them to continue to live full lives, maybe not run marathons but attend school, work get married and have children.

DGSs physio is pretty amazing too.

[Tonicwater]

Haka The social side was I think the hardest part at school. Like you say my DD seemed to have lots of friends, but in all her school years she only had two party invites. I would send in letters when she asked for a friend to come round. Because the school was a way from where we live I knew that it would be more than a fifty mile round trip for a parent to drop off, go home then come back and pick up. So I used to write that we would pick up and drop them home or they could drop off and we would take them home, any way they would like. Even this offer meant out of all the people I asked for her only two ever came.She does still keep in contact with these two now.She did stay and do after school activities once a week.

I took her to local groups so she met some local children but that was hard because they had friends from the schools they went to. For her even though school was fully inclusive the social side was really very hard.
I know my DD knew she wasn't being asked to parties or round friends houses. She would ask 'why' I used to say I didn't know.:(

Since she has been at college her social life has changed, She isn't allowed off college grounds without a member of staff. But she goes to the cinema, shopping. She has been to the pub for Sunday lunch and I am sure a quick drink. They have a social club that have discos and other activities.

[twlight]

hiya, im gonna join in as well - DS of 13 with CP etc - we use trihexyphenadryl for Dystonia which sounds like the dystonic storms mentioned and its been a god send - he seems to get use to it quickly but has helped the spasms and crying immensely.

[2old2beamum]

I wonder if anyone can help son has been diagnosed with neuropathic pain, is this similar to dystonia. He has cried and moaned for the last 6 months all usual things ruled out, now taking Propranolol with some success but is easily able "to off on one" He is cp deafblind etc.TIA

[sneezecakesmum]

Whats a power plate ?

[inhibernation]

Feel very sad reading reports of children who have been ostracised by their peers . Kids (and their parents) can be so cruel. Have noticed a people staring at dd when she is using her walker. The kids ask their parents why she's walking with that thing ......and the parents pretend they haven't heard. I'd rather they say "the little girl needs it to walk" or "I don't know - maybe we can find out" - rather than feeling embarrassed. Some children have approached me and asked what's wrong with dd or why she uses a walker - and I am fine with that. I hope it helps them understand the issue so that when someone with CP is in their class/work place etc, they will be more tolerant.

Sneezecake - a powerplate is also known as a vibration plate and it was once favoured by celebs such as Madonna because it offers a faster work out. However, it has since been used by injured athletes and more recently still, by people with CP - both with good results. Incidentally, after we bought one (would not have been a waste anyway, since dh uses it) the PT says one of her clients with CP uses it - and has had dramatic results. There is a related evidence base but I'm afraid I can't link because dh did the research. Gotta let him take charge of somethings eh By the way, dd's Paed thinks her CP is more moderate than mild but it's always nice to hear her referred to as "mild". dd has taken more steps since last week Unfortunately she also had a very nasty fall at nursery (went back in her walker and hit her head on the concrete surface)

[sneezecakesmum]

Ow I can feel that bump! I bought one of those helmet things (thudguard) for NT kids but DGS has not done anything exciting enough to wear it! His walker has chest support so cant fall backwards, but managed to lose all bodily tone when the dog went mad and nearly fell through the hole in the middle, sort of crumpled! Twas funny but an example of loss of tone. Luckily not done it since. We are reluctant to let him sit unaided because the topple-itis may put him off for life - he is a bit of a wimp tbh.

I am very interested in the power plate thing, anything that can build up some muscle strength would be brilliant. As he is overall very weak in the muscle department it may be useful, as he cant walk far in his walker her never builds up the strength which in turns hampers more walking . btw I read that most children with CP, despite have muscles that look very tight and hard at times, actually have very weak muscles.

It is a bit upsetting that people dont seem to know how to act around disabled children, getting embarrassed etc. If only they would see they are just children, just like their children but with physical difficulties, and sometimes it is just that one tiny fateful moment that makes these children different

[kellbell82]

hi everyone my ds 22months was dx with cp 2weeks ago ( in a letter ) so just trying to get my head around it all not really sure how i feel think as i don't stop don't think i have much time for it all to sink in , ds is such a happy little boy and his speech is coming on really well over the last few wks, its just his gross moter skills that are far behind he can't sit without falling back he does move around on his front by dragging himself with his arms, i think its his legs that are most effected , he also has a condition where bony lumps are growing he has them on his wrist back and ribs that cause him pain and will need ops in the furture , it would be really nice to talk with people who know what we are going through and at what age ur lo's started doing things as don't know where ds sits with being mild to moderate cp x

[inhibernation]

Welcome Kellbell. My dd was only diagnosed this year and like your situation it wasn't handled well by the medics. I'm sorry to hear about the dx but hope you will find this thread supportive and informative as there are a fair few mumsnetters who are very informed and have helped me a lot.
Someone once said to me that the achievements a SN child makes are that much more special. Totally true. I feel so choked everytime she does something new. In terms of milestones - every child is different. dd is 2 and she still doesn't sit well but has just started taking some independent steps. We don't know where that will lead....no crystal ball. That's the hardest thing. Have the drs said what type of CP your ds has?

Sneezecake - yes I was told that by dd's PT. The spastic muscles mask the weakness. That's why SDR is so dependent on intensive PT for favourable outcome. Dh says to look up "child learns to walk with powerplate" - it's on YouTube.

[JackTheNipper]

have just google searched that power plate, and it huge!!

[kellbell82]

hi inhibernation thanx for the welcome that is brill that ur dd has taken steps i bet you could not stop smiling : ) , the man that fitted ds for his splints said he had diplegic cp the pead is useless that we see and don't know when we gonna see him next as would be nice to get more info , we get lots of help with early intervention ds goes to a sn group 2 days a wk and they are going to offer me one day daycare for him he will go for few hours , i think i,m going to have to look up the power plate sounds good and prob good for me lol x

[hildathebuilder]

Welcome kellbell. My DS has diplegia and is slightly younger than your DS. We got the diagnosis in February, and at the time I wasn't sure I believed the Paed, but slowly I got used to the idea. And it is honestly fine. i soemtimes struggle with other children of his age about the place, but none of them are as lovely as my DS and some of them are just plain boring. So what if DS can't walk yet. One day he will, not sure when but he will. He is also DS just like he was before he was diagnosed and IMO the loveliest smiliest child I have ever met. He can't really talk yet either.

You also have had splints so that presumably gets your DS into the system, and again i presume means that you have a physio. IME the physios are the key difference between good treatment and rubbish treatment, and so much more use than the Paeds, who even in my large teaching hospital rely on the physios for diagnostics etc for little children. So if you can short circuit the rubbish paeds and go to community healthcare for physio (I assume seeig as they are suggesting SN groups and a nursery that you can push that through those avenues if the paeds persist in ebing useless)

My Ds also mainly drags himselfs by his arms (much more so since he got the splints) but can crawl normally, its just a bit too much effort for him most of the time as he is very quick and the drag method.

On the questions of what age DS did things, I would actually probably have to check the previous posts I had on sitting (which DS also doesn't like, he much prefers to kneel) but he started the commando crawl dragging just as he was last discharged from hospital (13 months corrected age) and cruise at 15 ish months corrected. He is just trying to stand independently (and fall over) at 18 ish months now. But its hard work. He gets set back every time he is ill which is a lot as he's in nursery and also has chronic lung disease (from being prem). But personally i think he does that when he's trying to tell me he's had enough now. As for where DS sits on mild or moderate, in our case they won't tell me anything until he hits 2 corrected age next May. I have an idea but I have to hope for the best and expect the worst if that makes sense.

Have you applied for DLA yet? If not I would recommend you do as it took us 5 and a half months before the DWP agreed, and although I felt that it was a bit of a shame if DS is entitled to it he's going to have it.

anyway there are peopel far more knowledgeable than me on this thread, but DS and I are similar(ish) newbies and finding our way through the system.

[madwomanintheattic]

inhibernation - what walker has dd got? dd2 used to take hers over regularly - she would go backwards a lot. in the end we changed the walker to an R82 croc which was pure brilliance. i don't think she managed to get it over at all.

just for interest, dd2 used a walker for three years, and then the physio took it away for a year, to see if she could be encouraged towards independent mobility given a bit of impetus... so we slogged it out for a year and it was awful - it really brought it home how 'disabled' she was, when you would have thought that the equipment would have done that.... no equipment was worse!! we ended up using the mac major all the time and it was reducing her independence considerably. so anyway, we got the walker back and then changed it to a croc, which she kept all through yr r. the walker enabled her to play with her peers (and they all wanted a go as well ) and was far more effective for socialisation than any social skills group!



and on that sort of note - it always catches me off guard when dd2 falls over and overly dramatic adults rush to her aid. i guess both she and i are totally used to it, but the sight of a little blonde 8yo (with fairly obvious disability) crashing to the ground brings them out in their droves. which is ok if she actually hurts herself (pretty rare nowadays) but for the other 8 or 9 times a day she just drags herself up again. i mean, it's not glamorous, and it takes her a minute to organise all her legs and arms to get back up again, but i'm sure other parents think i'm utterly negligent and uncaring... she caused a bit of a pile-up at brownies last night, as she was skipping at the front of a line (always interesting) and toppled over, with all the rest of the brownies ending up in a big pile like a comedy sketch. we all just said 'oopsy!' and disentangled everyone very matter of factly and carried on. but the look of horror on the two parent helper's faces as she hit the ground was priceless - i think they are at the 'still an unknown quantity' worrying stage.

that said, i do have to make sure i'm not overdoing the blase stuff. school have sorted her out a netbook, but were at great pains to explain to her that she would have to make sure she plugged it in every night before she went home. i did have to suggest that maybe she might need a hand with that - the abysmal fine motor skills being the reason for the netbook in the first place. the teacher did have the grace to blush, but she saw the funny side. she now has a computer buddy to help.

[sneezecakesmum]

DGS has major extension backwards issues at the moment which we hope will ease with time to a croc looks good for the future. We are too soft to let him fall anywhere as he is such a wimp timid boy it would def put him off trying again. Brainwave agreed on this so we are being extra cautious till he toughens up a bit and learns defence falling. CP children need to be bruisers tbh!