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Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

(950 Posts)
Galena Tue 29-Jan-13 08:58:56

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

sneezecakesmum Sat 04-May-13 10:47:06

Dd is darling daughter and DS darling son. I have a DGS (grandson). [Smile] Just abbreviations really and annonimity I guess.

I just came across group strep b from a newspaper article and because I am neurotic cautious paid for it. Midwives should be able to give info on private tests which cost around £30 if the NHS won't provide it free so you get informed choice.

Don't give up hope that things may improve. There are many parents given poor outcomes for their children who prove everyone wrong and do pretty well! And don forget CP evolves over the first 2 years and children who are stiff as babies can become quite floppy. DGS was diagnosed spastic quad and he is now more athetoid, so no coordination, or balance and fluctuating tone everywhere. Lifespan for severely affected individuals are sometimes less but it's because of other problems like pneumonia, infections, epilepsy rather than the cp as the brain injury is pretty stable.

choggers Sat 04-May-13 15:27:39

Ooow that makes perfect sense lol so I have a ds

I wish I knew this wen I was pregnant I think they should tell u this! Would have made such a different!

I thought this was the case well so far my ds hasn't shown signs of epilispy I know this can come at any time but going to keep praying. Well I'm hoping he does prove everyone wrong!he is that sort of kid that with all this going on he still manages to smile on a daily basis, just scared with no knowing what is coming our way find this a hard pill to swallow just have to take each day as it comes.

How old is your dgs?

X

neverlateforwork Sat 04-May-13 15:48:30

Hi Choggers. Cp in and of itself doesn't reduce life expectancy, but it can make co-morbids harder to deal with/ shake off - lots of kids with cp have respiratory issues, for example, or higher chance of aspiration leading to pneumonia. So, for example, dd2 used to aspirate frequently and we ended up with a standing prescription for anti-biotics to clear chest infections, that we could just access when we realised she was starting to come down down with one (it got so that we would know it was going to happen - choking episode, three days, chest infection lol). So, usually, it's the 'other' stuff that reduces life expectancy. There are some interesting things about cp and age ing on the scope site, and it's also interesting to read their adult forums and hear adults discussing work experiences, and how the cp affects them differently as they get older etc.

Hanbee - dd1 was full term and 9lbs. grin she looked like a complete fraud in scbu, but the first couple of weeks were really touch and go. I didn't get to hold her until she was over two weeks old as movement caused the saliva to pool in her throat and block her airway. Poor wee mouse. She skis black runs now and can throw a major strop. grin

2old2beamum Sat 04-May-13 16:34:38

choggers Agree with what the others say about CP and morbidity I feel chest infections and epilepsy are the biggest threat to them.

BTW sometimes old sneeze and I may put OF which is old fart (husbands) grin

sneezecakesmum Sat 04-May-13 21:16:12

OF is an unofficial abbreviation lol grin

neverlateforwork Sun 05-May-13 15:24:18

Choggers, ds is still really tiny, too. They won't want to be making any predictions about ability for him yet. At 7 mos we had been told dd2 would be unable to walk or talk, and she had a spastic quad dx, too. Her clinical prevention changed so much over the next three/ four years, that they were forced to drop the spastic quad dx. She has low tone now. She still has cp, but either through normal development or one heck of a lot of hard work in terms of physio, OT and speech therapy, (probably both lol) she has exceeded everyone's expectations.

The fact that he is smiling is great news! Dd2 smiled for the first time at six months, and they were the hardest six months of my life! Where is he with any milestones? They won't even be considering SDR at this stage, as they just won't know whether he will need it/ be a candidate for another few years.

The first two years are reaaaaallly hard. Be kind to yourself x

choggers Mon 06-May-13 21:51:24

Thanks ladies i already feel better about so many things especially as cant see pead till july as shes too busy!

i was thinking it must be somthing that can come a long with CP!
thanks sneezcake i like OF might have to borrow that one lol!

neverlateforwork that must have been so hard Dd2 not smiling some days that what keep me going DS it one of the smilest children, what is your Dd able to do now then and how old is she? if you dont mind me asking? DS has physio once every week to two weeks!

DS has never had a problem with breathing to date! hes been a bit wheeze from time to time with a cold but hes ok!

what sorts of things are we expected to pay for just so i have some ideas i am trying to keep putting money way just incase things come up but as i dont really know what he might need and everything the physio and ot says he needs we get it given to us on loan from the NHS?

once again thanks you guys have put so much in prespective! sleeping better already smile

neverlateforwork Tue 07-May-13 03:16:42

Oh goodness, I don't mind. I'm forever blathering on about her grin. I was madwomanintheattic earlier in the thread, not sure if you've read the whole thing. She's 9 1/2 now, mainstream school, goes to girl guides, takes swimming lessons, ballet lessons, skis (wants to be in the Paralympics) and is desperately trying to teach herself to skateboard. She also wants to learn to rock climb. She taught herself to read before she could speak. grin

She's also had years of physio, OT, slt, portage, sn nursery placement, and was statemented for communication and physical issues. At the beginning we had physio twice a week. Once school started, she had therapy in six week blocks, with six months or so in between blocks. She had lots of feeding issues to start with (she was born with no suck or gag reflex) and the first couple of years were pretty grim. She was tube fed to start with, and we had a rocky time teaching her to suck feed, but she got there eventually. She still has the occasional swallowing/ choking incident, but thankfully they are fairly few and far between now.

Have you applied for DLA? Ours has mostly gone on specialist equipment - for example we bought a whole bunch of specialist cutlery, bowls that can be used one handed, several trikes as she got bigger (and still growing lol), and a few alternative therapies along the way (we tried cranial osteopathy and later a chiropractor, briefly a homeopath (for drooling - it didn't work, and we went with joy-rides as she had a sensitivity to hyoscine patches) and a few other random things. It also helped us pay the mortgage for quite a while as I was unable to work ft due to constant appointments. People also use them for Lycra suits, and other things that can be recommended by the pct, but not funded... Like a decent walking frame, standing frame, etc. usually these things are provided, but sometimes there are supply issues. Also sn buggies/ three wheelers (often WCS will provide only a wheelchair OR a buggy, when really we could do with all of the above).

There's no shortage of things to spend money on - take a trip to 'kidz north' or 'kidz south'... And you are guaranteed to find a billion things that just might help with x,y or z... It can be overwhelming.

Dd2 is just so ordinary in my eyes now that I sometimes wonder whether other people realise... She was selling girl guide cookies in a store last week, and was working out the change, and handing it to customers, and in my head she was exactly the same as every other girl guide there. It was only when one of the customers said to her 'I'm going to share these with my work colleagues on Monday, and it's really fitting that you sold them to me, as I work in inclusive education' that I realised it must be bloody obvious to everyone else. grin methinks I've become somewhat blind to her disability!!

Ds sounds like he's doing very well. It's good to know you're not alone x

Jokat Tue 07-May-13 22:34:00

Oh, here you all are! The old thread is still on my watch list and I've found it so odd that noone has had anything else to say since late January! Only just realized it was full grin
My dd1 is now 4.5 years old and doing great. She was 11 weeks prem and diagnosed with spastic diplegia at 15 months actual age. She took her first steps at 22 months. We had a standing frame for a while, but never had need for a walker. She wears ankle splints at pre-school, but as she is faster and more able in terms of range of movement, we keep them off the rest of the time.
Does anyone else have a cp child who walks independently and have taken them skiing?
Our physio suggested to take her to Milton Keanes (the snow dome) to have her assessed there before taking her to a resort next winter. But that's quite a long way to travel (we are just south of London) and I was hoping someone in a simliar situation could tell me about their experience of introducing their child to skis, how much adaptation they needed etc.

neverlateforwork Wed 08-May-13 00:16:17

Yep.

Dd2 is in an adaptive ski program and skis every weekend in the winter. She walks independently (was very late - finally got rid of the walker in between yr r and 1) and skis with no adaptive equipment. We used a toggle on the tips of her skis when she started, to prevent crossing etc. she started about the same as your dd1.

I know loads of kids (and adults) with disabilities who ski - some with outriggers, some with sit skis, and some with no adaptive equipment. I'm also involved with an adaptive sports program. grin

We didn't ever bother with snow dome stuff, tbh. We found an adaptive instructor in our resort of choice and went for it. Obviously we started with some shorter lessons and the rest of the time in daycare (building up stamina takes time). We also avoided poles like the plague until she had mastered her feet...

She is 9, and got her black runner sticker this season. grin She now skis down steeper stuff than I do... In fact she was skiing with the trainer for the Paralympic team on Saturday (just because he happened to be there with our disabled skiing group).

If you fancy heading to the Canadian Rockies, (and have a fortune to spare) I know just the place. grin <hard sell> I'm not on commission, honest. I just know how great it has been for dd2.

Let me know if you have specific questions.

Jokat Wed 08-May-13 22:25:50

Wow never, that's very encouraging to hear!
Did your dd ever use a spreader bar (to prevent hip damage should she slide down backwards) along with the toggle at the front?
The Canadian Rockies sound very enticing grin but we won't venture that far for now, with both dds in tow. We will go to a resort just outside of Kitzbuhel in Austria in Feb next year. I will try and find out if there is an adaptive skiing instructor there, but dh is quite good at teaching people ski (and very patient etc), so he's more than happy to teach her himself this first time. I'm just worried that he won't be able to recognise her limits, as it is so hard to tell what her legs will physically be able to do and what they won't. Maybe I'm overthinking it?!?

pofacedlemonsucker Thu 09-May-13 14:09:00

It'll be great - just stick to short bursts to start with. Fatigue was dd2's biggest problem. No, she didn't use a spreader bar as we wanted her to be able to control the skis herself to a larger extent, just a toggle at the tip.

It's wall to wall adaptive instructors here as we run a 10 week program every winter. grin

It was slooooow to start with, but she loves it. Have fun and let me know if you need anything!

pofacedlemonsucker Thu 09-May-13 14:09:31

(Oops, sorry, nc. Tis madwoman/ always/ never) blush

Jokat Thu 09-May-13 15:36:12

Thank you very much for your advice/support alwaysmadneverpofacedlemonsucker grin What I would give to go skiing every winter weekend! Whistler has been my absolutely most favourite resort so far, but it's just too far to go from London with two little ones... But we'll go with a large family group, incl. the kids' grandparents, so it should be grand and lots of play time off skis as well!
How has your dd coped with lifts at the beginning?

choggers Thu 09-May-13 20:53:18

oh you DD2 sounds amazing! I cant even being to image DS2 being able to do anything like that as much as he would look silly in a tutu! smile

I have had a look at that kidz south thank you for that they have got an show in reading which is right near us! so we are going to attend to give us some idea! did you get your physio from the NHS? as we haven't been offered it twice a week! I think he would benefit from that! I do it at home with him on a daily basis that is what they have shown me to do with him! how did you find out about the other therapy's?

it amazes me what you children can do sking is something I would never think of doing with harry its just nice to hear that there is life after CP as everyone seems to know how to carry on so well! I get scared at the thought of doing a food shop with the DS's lol

pofacedlemonsucker Fri 10-May-13 00:40:30

Choggers, at 7mos we were still under the impression that dd2 was unlikely to walk or talk. He has a long way to go yet, and as he grows and develops I bet he amazes you with what he can do. smile

Yup, NHS physio. We were living in Scotland at the time - she spent 5 weeks in scbu (first two on O2) and we were discharged with a full therapy team. She had slt from birth, which still makes me laugh to this day, but the slt literally kept me sane for the first two years. It wasn't all roses. (And I ended up with a breakdown after 6 years because I hadn't dealt with the whole thing properly at the time - hence my frequent advice to everyone to be nice to yourself and ask for help!!)

Ds1 did ballet - no tutus in sight. It's great training for martial arts, and brilliant as a physio add-on for kids with cp. great for their balance. Dd2 started ballet before she could stand unaided - she had a chair to hold on to for each lesson. grin

Jokat - lifts have been a bit of a fuss, if I'm honest. She's tall enough to cope now, but previously chairlifts have involved her loading with someone taller so they can do the one-armed heft to get her bum on the seat (I'm too short and found the whole thing terrifying, dh is 6'2" with long arms, so could lift her up and on with no bother). If you ask them to slow the lifts down whilst you get organised they will - they are usually very good. And ask them to call ahead to the offload so that they will slow it whilst you get off as well - or you can make the international flapping your arms sign for 'slow down!!!' To the liftie at the top. grin

Dh still goes on t-bars with her in front - we don't think she's quite got the dexterity to organised the offload, so he loads with her in front of him, and essentially pushes her up the hill with her skis in between his.

She can load chairlifts on her own now - it's just a matter of waiting for her bum to be high enough off the ground/ seat!!

Choggers - why are you doing shops if it's stressful? Tesco direct is your friend. Dd2 screamed pretty much solidly for the first year or two - including in stores, and eventually when she became verbal around three or four, she told us the strip lights hurt her eyes. A quick pair of sunnies fixed that. <sigh> sometimes it's guesswork. It took longer than that for us to be able to use washrooms with hand dryers or magic flushing toilets though...

Have fun at kidz south x

millenium2000 Sat 11-May-13 12:39:17

My daughter was born prematurely at 31 weeks. At 18 months old she was diagnosed with spastic diplegia

millenium2000 Sat 11-May-13 12:42:30

I wonder if anybody can help me find a website. I found it when DD was first diagnosed but she didn't require anything from it at the time. It was for products that would help her, but didn't actually look like disability aids. They were aimed at children.

pofacedlemonsucker Sat 11-May-13 13:43:47

Special direct?

One of the manufacturers websites? Like r82?

You'd probably be better off going to kidz north, or kidz south and browsing the stands, tbh.

We have usually manged to buy things via local disability supply stores (not the bigger stuff like trikes, bviously, for that we go to specialist physio led demos) - they have a raft of catalogue s as they don't usually carry too much paediatric stuff, but they are fine for cutlery/ bowls/ button hookers etc.

What sort of thing were you needing? Sometimes it's best to discuss with your therapy team if you are looking for seating etc, as they know the products. You can then read around the subject and post on forums if you are looking for something but need ideas?

Fledglings (I think it's still around) used to have reasonable kids stuff (clothing and the like, too, including school uniform).

There are so many, tbh.

dev9aug Sat 11-May-13 18:16:14

I am feeling quite overwhelmed at the moment, How the hell did you fit all the therapy in a day. There just seem to be not enough hours to do the physio programme, let alone anything else in the day... How do you all make sure that everything gets done?

Do you have set times to do the therapy or do you just do as much as you can?

Btw, Galena saw the video of your daughter on the other thread, very impressed with her work, she just seemed to get better as the video went on... smile

dev9aug Sat 11-May-13 18:19:04

sorry that sounded quite downbeat, I am not. Very pleased with his progress so far. But I would like to know your tips to make sure we are getting the best use out of our time.

sneezecakesmum Sat 11-May-13 21:14:56

I think re therapy time, you can only do what you can do! I wish we could make extra hours in the day to get extras in because we have to go at a 4 year olds pace and he will only tolerate so many sit-stand-squats before he rebels! We have a brainwave programme which we follow most afternoons as he is in nursery picking up bugs interacting there and they do hand work with him, so afternoons is walking, sitting, kneeling etc. something has to give and unfortunately speech and books have taken a back seat, which is heartbreaking as he loves books so much, but the Kidwalk walker has been so good for him physically we have concentrated our efforts there. He's come down with another bug today so he's having a few days off smile

dev9aug Sat 11-May-13 21:37:29

Thanks sneezecakesmum, We have a programme from a physio so we are trying to follow that but it just seems there are not enough hours in the day.

dev9aug Sat 11-May-13 23:26:06

Sneezecakesmum I have just seen a YouTube video of the kid walk, that's a brilliant piece of kit.

sneezecakesmum Sun 12-May-13 19:13:09

Kidwalk is brilliant. Its the first time DGS has shown any interest in walking and lifting his legs up reciprocally. yesterday he was sitting and he pulled his leg up and undid his shoelace grin Would def recommend the kidwalk. The rifton gait trainer was ok but this is so much better. He will be getting one eventually once the rep has measured him up. There are never enough hours in the day!

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