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

[inhibernation]

Great to "see" you all here
Anon - thanks for the supportive words. I suffer with a lot of guilt anyway so it doesn't take much. I can't bath with dd cos I get very cold in the bath unless it's really hot. I suppose I could get in for 5 mins but I'd then be shivering and have to get out..............and dd would be trying to yank my "buttons" (nipples - which stand to attention when I'm cold!) Sorry if tmi
Hilda - hope you are ok - sounds like you have a lot on your plate. dd has splints. We sort of expect she will always need them.
Madwoman and Sneezecake - thanks for joining us. We need some experts on board.

I never realised how many of us were here lurking

[slowburner]

We use midazolam for DD as she has seizures which are tied to temperature but which do not stop and she goes into status, ends up paralysed too afterwards. The one time since having it we have used it at home it worked so fast it was a case of blink and you'd miss it, we had to wait till she had been seizing for 5 very long minutes before we could give it, by which point the paramedics had arrived as she couldn't swallow and I was concerned about her breathing. I believe you can give two doses of midazolam IF it has been agreed by your neuro?

Do other midazolam users have a care plan in place? Ours arrived today, 5 months after we were prescribed the drug

[Sevenfold]

ok I know I said I don't post in sn now, but I really deel on threads like this where a lot of you have such young children, sometimes it is nice to hear about an older child(or sometimes very scare)so....
my dd is 16 she has athetoid cp and is severely disabled, oh and epilepsy(I foget that as it is controlled)
she goes to a brilliant sn school and has been there since nursery, she has a good peer group and the sn school allows her full inclusion and allows her to explore being independent(things like driving her powered chair)
the worst time was the first 3 years, little support, doing conductive education which she and I hated, just horrid, but once she got in the system, it got better,
she has blossomed at school, yes she is behind her nt peers, but in her sn world she has done well, with the help of certain medicines her epilepsy is controlled, her extra movements have been controlled (she can now sit on the sofa without sliding off)
a couple of years ago she had her first op, to sort her dribbling out, it worked, she also became dry at about 11,
I could go on, but the reason I have posted this is just to say that the future will look really scarey(we have 19 plus to worry about now) but even though there is no instant cure for CP, there is nothing hopefully to stop a lot of children from having very happy lives.
(disclaimer my dd has no health issues)

[inhibernation]

sevenfold - thank you for your kind words of reassurance. It is good to hear from parents of older children with CP. I would love it if dd can go to her brothers school (mainstream) but if she does have to go to a SN school it will be because it's the right place.........access is an issue we really need to consider. It's great to hear that your dd has done well

[Sevenfold]

she always wanted to go to her brothers school, but it would have meant exclusion for her.

[madwomanintheattic]

i used to use skinuk a lot, but drifted off when i discovered mn. i'd pop back periodically, but they implemented that join and pay thing and i just can't work out how to use it now, so you're not alone!

i think one of the last things i posted was that we were moving to canada. i used to go to a few meet ups when we were in the uk, they are a lovely bunch. they always used to have a really good core of cp parents, but it looks like we have lots here now, too!

[sneezecakesmum]

Me...expert...[laughing head off emoticon!!!] thanks anyway

[madwomanintheattic]

how's the head switch going, haka? great that you eventually got it sorted, sometimes it just takes so long to work out which comm method works.

[inhibernation]

Haka - it must have been so frustrating for you to be ignored by healthcare professionals all that time......only for your questions to be answered by a SN forum. It's really sad that this is the reality that a lot of us are experiencing. dd's CP wasn't picked up despite me taking her to HVs to be weighed every week and asking to see Paed twice. Unfortunately I now have a pretty low opinion of both groups of HCP. I do realise that CP often doesn't become apparent until later but in dd there were pretty clear markers - and at the very least I feel they should have referred her for physio when we first raised concern. And how they didn't notice her high tone................. What extra support does your dd get at school? Does she like school?

[survivingsummer]

inhibernation - they seem reluctant to dx CP in some, especially milder cases and I'm not really sure why? It is that you weren't referred for physio.

How long did others have physio for? Ours seems to be going on indefinitely (4 years now) although nothing has changed for my dd - we go every few months and do more of the same exercises Do they keep seeing children until they hit puberty in case of any issues there? I will of course ask at my next session but just wondered especially as some of you have older kids here!

[madwomanintheattic]

dd2 only really gets physio once in a blue moon now - but we stay on the books so that we can be seen if we need to without waiting on a new referral. for the last couple of years she's had one six week block (so 6 sessions) a year - tbh it's fine, and we were doing it in the summer so we didn't have to drive to the hospital in the snow lol. no idea what they'll offer here, we've just completed the referral forms for all of the new team, so it's a wait and see. school have been advised that they do need to change her coding back to severe by the outreach team though (it got randomly changed in transition when we moved) so now that's been sorted, things should start happening again.

enjoy your conference, haka.

[madwomanintheattic]

that's fab - i love it when you get to meet a really great role model like that! i do some voluntary work for a pan-disability organisation and it is great when we get adults with disabilities themselves volunteering or being paid to instruct/ help out with the youth.

dd2 wants to be a ski instructor now, because a 17yo friend of hers (with cp) that can't walk unaided has just been selected for the provincial ski team and intends to train to be an instructor.

yy re severity and access to physio - for 'mobile' kids a lot of the stretching is done themselves as they walk/ move around, so it does cut down on time and effort. i know a couple of folks (adults) who routinely go in for tendon release as they don't find their own physio routines that beneficial and have opted for the regular surgical route though .

how's she doing with her head switch?

[madwomanintheattic]

i've spent the last two weeks helping out writing grant applications for sit-skis the one i'm helping out with now is for hand cycles and a trail rider, and some fittings for kayaks (booms) to stop them rolling and some adaptations for wheelchairs to kit them for rough terrain. i'm really excited that the disability community might have some shiny new equipment to play with in this neck of the woods soon!

[sneezecakesmum]

It is always very reassuring to read of young (and older) people with CP who have not let their CP define who they are but live full lives despite their disabilities. My DD (DGSs mum) has met one or two such inspiring people through her job too, and although DGS is not severely affected it is always reassuring to hear that anyone can succeed. She also worried about bullying in school but a counsellor who's child has issues with mobility said they're more likely to be protected and looked after by the children than bullied.

Today DGS managed to say bye bye with the help of a raspberry blowing session. It was in the right place as I was off home and makes a nice change from all the 'd' sounding words! DD thought he said shit the other day but I'm doubtful as its mostly d sounding words!

Inhibernation. DGS was taken round a fab SN school (unbelievable amount of equipment/technology) but the head teacher thought he would be better in MS, and your DD sounds way too mild to me. She would have loved him to go there though as he had a 'lot of potential' Most MS schools can accommodate a child with disabilities so dont worry on that score.

[slowburner]

Re the physio for mobile children we notice it is getting hard to get DD's shoulders to maintain movement now that she is not crawling everywhere, we desperately hope think that her shoulders will improve once she manages to relax and not hold herself stiff. Our physic is fecking useless.

[madwomanintheattic]

how is her core tone, slowburner? we find that with dd2 her upper limbs are freed up when her trunk is well supported (low tone in the trunk is fairly common but it sometimes takes a while to find the link between trunk tone and limbs/ fine motor) - her fine motor sounds quite good though, so i wonder if the spasticity in her shoulders is linked to her trunk tone or not... what seating are you using for her self-feeding etc? is she quite well supported around her pelvis or trunk?

if she's concentrating on walking you may well get some intention tightening as well. dd2's tone was fairly typical, in that it was reasonably low, but on effort it would increase exponentially and become high tone - even in areas that weren't supposed to be under effort.

we always tell dd2 to 'relax' her ankles (particularly when i'm trying to cut her toenails lol). it's totally counter-productive as it is high tone, not holding herself tense, but it's human nature to say 'relax!' i think. and when she became verbal at around three, she would 'talk' with her shoulders (it's really common for kids like dd2 to raise their shoulders with the effort of speech) - she still does it a little now, but it's nowhere near as noticeable as it was.

(i'm just wittering in case you spot any similarities really - ignore if nothing rings any bells!)

what is the physio doing with her? are you doing any gym ball work? or wedge stuff? balance tasks?

[survivingsummer]

Thanks for that info about the physio - dd is very mobile so I guess it makes me worry about what they might be looking out for in her development However, it is good that if there are problems it will be picked up.

sneezecakesmum - re the bullying in school. I've been really worried about this since dd started reception but agree that other children can be very protective about those with physical difficulties. My dd hates being mothered by the older girls but it is lovely that they want to look after her! She has an older brother to fight any battles for her but is hard as nails herself in any case - no shrinking violet

[JackTheNipper]

Just lurking, I'm not much of a poster, but DS has a Dx of spastic quad, but we really think he's athetoid, hes 3 and just (fingers crossed) starting to get a few more sounds and words

[madwomanintheattic]

hi jack! ds is like my dd2 then. we got her re-dx at 4. she became verbal unexpectedly around 3, as well.

[slowburner]

madwomanintheattic our physio is next to fecking useless. Gave us the dx and then walked out the door telling to to just pass to DD's weak side but there was little that could be done. DD has good core tone, she moves well when seated I her car seat or buggy, less so in her highchair, when she is warm, happy and concentrating on something she relaxes all over, we honestly. Thought she was 100 % clear of CP until she started walking and that damn right shoulder started to rise with the effort of balancing.

Liking the ball idea, have a birth ball somewhere which I'll find up. Ty

[survivingsummer]

slowburner - we do loads of ball stuff although dd has low core tone (bain of our lives ). Can def recommend as is fun therapy! We got a small one 45cm which is the perfect size for dd..

[madwomanintheattic]

yy, the tightening up when walking could be indicative of low core/ trunk tone, so any trunk exercises on that gym ball would be good... the car seat would support her core well, so it would make sense that she relaxes and moves well there etc... with dd2 if she is having to stabilise herself it makes her extremities tighter. (with slightly more involved kids it can lead to 'propping' with the arm on the weaker side - esp at school type desks and chairs with little support) does her highchair have any pelvic support etc? she sounds as though she's doing great with her cutlery and everything though!

physio sounds a joy. we've had one completely useless physio (that actually worked in a special school) but the rest have been fabulous. there's always one...