Here some suggested organisations that offer expert advice on SN.

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.

everydayaschoolday Wed 02-Oct-13 20:13:09

Hey Fizzy and Inhibernation we're all watching with interest and wishing your kids well. They both seem to be doing fantastic smile Keep us posted when you can.

Fizzyknickers Wed 02-Oct-13 20:53:15

wills wish

You can follow his progress here smile

everydayaschoolday Wed 02-Oct-13 22:36:00

Fizzy I've had a sneeky peek! Fabulous pictures - he's just gorgeous isn't he?!

everydayaschoolday Wed 02-Oct-13 22:40:50

All those exercises look like hard work - he's doing so well. Go Will.

Fizzyknickers Thu 03-Oct-13 20:08:15

Thanks smile he's my little star! So proud of him.

Those who have had SDR, Does it affect their mood after? He is so grumpy and stroppy. Naughty even. He's never behaved like this before an I am at a loss sad

HairyMaclary Thu 03-Oct-13 20:45:12

Hello all, it's been a while since I was on this thread and there are lots of new people. Hello all! So many post SDRers! We are too but have taken a different route as have had the Oswestry op 18 months ago. We started to fundraise for st. Louis, before they were doing it in the UK but decided to go for it he. It's been v successful - see my other thread about independent standing. One thing I would say picking up for sneezcakesmum's post is that I don't think enough emphasis is put on gait training post op by anybody. It's all about strengthening from all places, obv this is really important but DS has really struggled to unlearn bad gait patters set by Kaye walkers and a determination the be independent and it's really hampering his progress. We do treadmill time almost every day which helps but I think the brain training aspect if this is massively undestimated, especially in those who walked badly pre op.

I haven't read through the thread but good luck to all those on this CP journey. I am looking at secondary schools!

everydayaschoolday Thu 03-Oct-13 21:36:20

<waves to Hairy> smile

inhibernation Fri 04-Oct-13 11:50:37

Hairy -so pleased to hear ds is doing well . Will check out your other thread. What sort of brain training dies ds have?

Fizzy - yes I clocked that a while back. These social network things overlap and you might find that we are not the only ones also on the SDR fb pages ;) I heard gabapentin can alter mood. Is ds still having this?

inhibernation Fri 04-Oct-13 11:56:37

And everyday thank you for the support :-)
dd is doing well but she was high functioning pre-SDR and as such has taken a big step back. Her range if movement is better though (adductors, hamstrings, heel cords) and we can already see that her posture will be straighter. Yesterday she got off a chair by herself and used the furniture to walk around. So things are moving in the right direction :-)

Pumpkinpie11 Fri 04-Oct-13 22:26:18

It's lovely to hear how those having SDR are getting on both the positives and the negatives because I'm thinking about taking that route with my LO. Hearing about the whole process is great because I don't want to go into it wearing blinkers.

On another note can anyone tell me what an OT is supposed to do?
I've received a letter today telling my that my 2yo has been discharged because she has met all of her targets. I was just wondering because she can't walk, stand or sit very well yet and I thought OT were meant to help with practical things like that!
I have a sneaky feeling my complaint may be the reason though rather than her meeting goals which I didn't even know she had!!

sneezecakesmum Sat 05-Oct-13 11:27:44

Our experience of OT is more for fine motor skills and arranging equipment, chairs etc. the things you mention are more physio based.

Do they mean targets for fine motor skills (building a brick tower type of thing) that a NT child can do?

I would check with them what targets she has met.

melmo26 Sat 05-Oct-13 15:01:07

Hi we were told on thur by our physio that she was putting a referral request in for OT for dd. She told us she should be able to help us with ideas for equipment for sitting. Dd can't sit in high chair without flopping so we stuff blankets around her to keep her still. Also to help dd more with using her R hand for picking things up. At the mo she doesn't use R hand for anything yet as its tight and weak and she has no control over it yet.

I was going to ask what they actually do different to the physio but guess I don't need to nowsmile

muchadoaboutsomething Sat 05-Oct-13 15:51:24

Our experience of ot the same as sneezecake's equipment and some small fine motor input, not much. We are just about to follow up a bit with regards dressing and undressing, and cutting food but to be honest not expecting much.

everydayaschoolday Sat 05-Oct-13 16:51:22

Our OT has provided:

(1) a corner seat to provide the correct posture for sitting, along with the matching table. The idea was that the seat does all the support so DD2 didn't have to work hard at sitting properly. This then gave her the support to concentrate on fine motor activities at the table - pulling a lace with toy attached to the end, holding a crayon and mark making, building blocks, sticker on the hand etc.

(2) in conjunction with the physio (dual appt) they agreed and fitted a stand for DD2. Physio was interested in posture and weight bearing, while the OT interested in enabling the environment (ensuring the stand was sufficiently supportive and appropriate) to enable DD2 to undertake fine motor skills on the attached the table (checked table was at right height and appropriate for DD2's use).

(3) a highchair and table that provides the correct seating support, again to enable DD2 to concentrate on fine motor skills for self-feeding.

(4) a review of any support required for feeding. she came at breakfast time to see how DD2 got on with eating and self-feeding. Since I had already bought a doidy cup and turn-in curved cutlery, the OT was happy that we had already enabled DD's environment. But she confirmed that these would be the tools that she would have advised us to get.

(5) she did an OT review for DD2's Statutory Assessment - a separate assessment appointment then a written report to LA. (We've just been awarded the Statement of Special Educational Needs (applied in June) and I'm happy to talk to anyone about this if you have any questions).

(6) General advice so we've asked about where best to get a trike for DD2, advice on providers of specialised equipment etc. Also advice on exercises to practise ie hand-over-hand stuff, pincer movement, pencil holding etc

I'll have a look for some of the equipment, hang on...

everydayaschoolday Sat 05-Oct-13 17:07:21

Jenx corner seat and nursery table:

www.jenx.com/products/seating/corner-seat
www.jenx.com/uploads/files/_old/instructions/Nursery%20table.PDF

Standing frame:

www.quest88.com/therapy-mobility/upi-hip-stander/

high chair:

www.completecareshop.co.uk/disability-elderly-aid/2713/breezi_high_chair.html

And we bought the doidy cup and curved spoon and fork (amongst other things) from here:

fledglings.org.uk/docs/pdf/brochure

everydayaschoolday Sat 05-Oct-13 17:11:03

The equipment from the OT and physio is on loan and we didn't pay for. We have returned the Jenx seat and table, and the standing frame as we've moved on from these now, but we still have the high chair.

everydayaschoolday Sat 05-Oct-13 17:24:15

Sorry for drip-feed posting, I'm trying to entertain a 5YO while I type confused.

OT said on last visit that she'd be talking to us soon about assistance for toilet training. So I'm guessing adapted/supportive potties etc. We have our next appt on 10th Oct so I'll post again and give you an update.

Now that DD2 is starting to do a little independent walking, I'm also expecting the OT to advise us about hand/support rails for getting in and out the bath, and perhaps handrails next to the sink or toilet and next to the front door - don't know if that's all necessary, but that's what I'd ask her about and get advice on. 2YO might be a bit young for handrails, but I really don't know.

Can you guess our OT is lovely? As is the physio and paed. We're very lucky.

melmo26 Sat 05-Oct-13 18:23:42

Thanks for all the info on OT. I didn't know they done somuch. Dd is 6 mo nearly 7 mo, so maybe that's why physio wants to get OT in.
Dd can only just drink from a medium flow teat, she still chokes when drinking. I have tried a few times with fast flow with no joy so don't know how she would manage a sippy cup. Worth a try.

everydayaschoolday Sat 05-Oct-13 19:39:13

Hi Melmo. Our DD2 was the same at 6 months. I think we got OT support from about 6 months when we moved DD2 into a highchair for mealtimes. Physio looked at our highchair (good quality wooden one from Mothercare) and said it was a good one but she had access to better support ones that she could provide for us - and did.

DD2 is now 2YO. She has a bottle (warm milk) last thing at night and is on a medium flow teat. She can't handle a fast flow one even now. But she manages valved and free-flow sippy cups and unlidded beakers and doidy cups with only a little liquid in them at a time. The fast flow bottle teat just makes her choke. I think we tried sippy cups from about 12 months. Unlidded beakers and doidy's from about 20 months. But that's just us, I expect others will have had earlier/later transitions depending on each child smile.

Holidaybound Sun 06-Oct-13 08:17:35

Hi all,
I've spent the last few weeks looking through this thread and the previous one - it's been amazing to get new ideas, links and therapy options, thank you!
Our ds is 3 1/2. He has quad cp with legs worse than arms. He is a happy smiley boy who is very proud of himself as he's finally mastered 4-point crawl and kneeling. Now he can kneel he's interested in pulling himself up on the bars of his bed, and its worrying us that he'll either fall badly within the cot, or somehow get over the bars in his excitement as he is larger than most children using a cotbed. He would fall out of a bed without bars. Does anyone else have this situation? Is safe bedroom arrangements something OT should be advising on? We've looked into specialist beds for sn, and been quoted £3500 to £10,000!!! We're reluctant to spend this much as in a few years when his language is better we may be able to teach him not to fling himself out of bed. Does anyone have any cheaper, safe ideas?

sneezecakesmum Sun 06-Oct-13 08:40:50

Would a mattress on the floor with those foam side pads work at all? The side bits are not expensive and would stop him rolling onto the floor in his sleep but he could just crawl over them and not come to harm as they are so low. Either way a carpeted floor is a must grin

It wouldn't be for long, but awful for your back! Really difficult.

Not sure if OT do beds. They do sleep systems but that's not what you want.

2old2beamum Sun 06-Oct-13 10:36:14

Both of mine have been provided with beds by the OT, DD has a massive cot and DS has a bed with drop sides. DD was 3 when she had hers.

Good luck.

everydayaschoolday Sun 06-Oct-13 13:31:30

wow, didn't know OT did beds. Although, that makes sense that they should.

Hi Holidaybound, congrats on how well your ds is doing. That sounds really encouraging. We use the inflatable tubes when away on holiday and DD2 has to sleep in a single bed. They won't stop her actively crawling over them, but will stop the unintended roll-offs in the middle of the night! These ones (I got them from Fledglings (link on previous post)):

www.duskymoon.com/products-2/dream-tubes/dream-tubes-product-details/

At home in her cot bed (sides off), we just put a soft pillow on the floor for any occasional midnight roll-outs (it's low to the ground so hardly much of a fall, especially with pre-positioned cushion in situ). And I stuff more pillows in the gap between the mattress and the wall to prevent slipping into that space. I'd go with Sneezecakesmum with a mattress on the floor if your cotbed was a bit high, but maybe ask the OT for some provision/recommendation.

Kaffiene Mon 07-Oct-13 00:14:14

holiday your DS sounds similar to my DD at that age. We went with an Ikea toddler bed with a half rail down it and her old cot mattress on the floor next to it to begin with. We wanted to give her as much independance as possible. Once she got the idea of getting out of bed herself we had to take the rail off as she would get a foot stuck under it when wiggling out. It was another 2 years before she could get back in herself though smile
We have always found she sleeps better in a bigger bed because it takes her more effort (leg kicking) to roll over. If we had the space I would get a wooden frame double bed and chop most of the legs off. Then you also have space to squeeze in next to them when ill, sleeping badly with spasms etc

Pumpkinpie11 Mon 07-Oct-13 15:15:49

Everyday - i was wondering if you've started toilet training?
My LO uses her potty all the time when we're at home (she's 2) but I have to be withher ALL the time because she can't get to tell me herself or get on the potty, knickers down etc.
OT pretty much just told me she's too young even though she's already doing it and therefore they refused to help or offer advice before discharging her.
How do other children manage to get on the potty, clothes off etc without adult help? Also she sits very badly on the potty because her legs go stiff and she struggles to sit up.
She gets quite upset at wearing a nappy or when she wets herself because I've left the room!

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