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

[Galena]

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.

[alwayslateforwork]

We hugely promoted crawling for dd2. I've often mentioned my Attila the Hun techniques to teach crawling using the stairs etc... I have never met a physio (and we have had about ten or so, to date, that we have been very involved with) who has suggested anything negative at all about crawling. Of course, it's only part of the picture, and there should be a good schwack of appropriate weight bearing (using a standing frame as necessary) and physio stretches to make sure there is as little decrease in muscle/ tendon length as possible, but tbh contractures are part and parcel of spastic cp - hence the management strategies. Banning crawling sounds completely counter- productive in a ll sorts of ways.

Sorry, I know that was a while ago, but it's made me quite cross. How awful to be removing some independence from a child, and preventing development in that way!

There - we had a similar glitch around 3 - the physio took away dd2's walking frame, with the expectation that if we removed the support, she would begin to walk independently. It was the worst year, honestly. She was far less independent than before, we ended up using the major far more, and she was very obviously 'more' disabled, and required more support. After a year, they gave her a new improved walker (croc, my fave walker ever) and she was back to being miss independent again. After a further year she walked independently (and, as you know, she now skis/ whatever).

Sometimes it is just too soon to expect that level of development, but it doesn't mean that it won't be possible in the longer term - and I know it was just too early for dd2. She didn't have proper standing balance until nearly 5, although she could weight bear and hurl herself across the room, a la 12mo! So, don't give up, he does sound as though he is nearly there - just that he isn't quite ready yet.

I don't often get mardy with professionals (generally the whole thing thing is a 'suck it and see' experiment, and if it doesn't work, you move on to the next thing) but I'm ticked about the crawling.

On a brighter note, dd2 had ft 1-1 in nursery from 2yo - they gave her a free place from her first birthday due to her needs. She wasn't statemented until yr r. We did it in the final yr of nursery, so it was ready for school. Physio, OT and slt all went into nursery and liaised with the keyworkers and she had portage from early too. Tbh, I find there is a larger degree of acceptance for support with cp - in terms of provision, it's a much safer bet to have a cp dx than a social communication disorder - people have mostly fallen over themselves to help dd2, whereas ds1 was roundly ignored until he was 10...

[Galena]

there that's interesting, I know of a few people on a certain FB group who have been to GOSH to see the ex-Bristol neurosurgeon...

But yes, MuffinPig ask paed for a referral. They are not allowed to turn down a request for referral to a specialist, so if he tries to put you off, be prepared to stand your ground. I simply told my DD's paed that I wanted to go and have a discussion with the surgeon about SDR to find out more about it...

[Muffinpig]

Ok thanks, thats really helpful. I will do my best to stand my ground! Might need to get a babysitter for my 1yo DD then so I can actually have a proper conversation.

Sorry to keep asking questions but how do I go about getting a statement? Do I just apply somewhere independently like for the DLA?

[alwayslateforwork]

Have a look on the IPSEA website. Tells you everything you need to know.

It is much easier if you have nursery or an educational establishment onside, though - if they apply it tends to be much easier.

[isw]

Hi everyone,
Well I can't believe it but dd is 6 months post SDR and I honestly can not believe the changes in her life. She has gone from being able to use her Kaye walker when she was wearing AFOs and ankle prompts to stop her scissoring to being told yesterday she doesn't need splints anymore! Without the op she would have been in a wheelchair pretty much full time by now as her legs were getting tighter and tighter. She wears insoles and has night splints for stretching when needed.
She never really crawled, only bunny hopped and we are really noticing the lack of co ordination now. Her walking in her Kaye walker is deteriorating as she is too good but after a few steps with tripods she gets in a awful tangle as she is not used to moving all 4 limbs separately.
Although she can now crawl she hates it as she can move so much faster by hopping. We make her crawl up the stairs at home and in soft play. We have also started taking her climbing to encourage that cross body motion.
We went to St. Louis but were accepted at Bristol am happy to answer any questions

[sneezecakesmum]

isw. All sounds fabulous. So pleased SDR is being done in the UK.

[2old2beamum]

Hi isw Briefly DS 14 is a post pneumococcal meningitis at 8 months. Left with devastating problems severe CP affecting all limbs worse lower limbs, deafblind epilepsy and jej fed. We adopted him at 5 so nothing had been redressed
On the plus side he is a beautiful boy who uses on body sign language so need upper limbs He has a cochlear implant at 9yrs which gives him enviromental sounds,
He as he gets bigger is becoming difficult to do "cares" and we have been offered SDR do you think as a mum it will benefit him?
Sorry for long post

[isw]

2old2beamum it's a difficult one having not met your DS.
In my experience it is so much easier to care for DD, she no longer scissors so personal care is much easier. Her legs were very floppy post op, so you were having to deal with heavy spaghetti legs floppy everywhere rather than twisted out in front. She was unable to do any standing transfers barefoot, she can now. Her sitting has improved dramatically as she is not constantly counter act her spastic legs. Bathing is easier as she is not being pushed back by her legs. I am able to carry her because she can put her legs around rather than trying to lift her out in front of me. Dressing her is way easier. I realised today she was wearing a top i had discarded as too small (ie too difficult to get on) She does have some arm involvement, mainly her right, obviously she still has the increased tone in her arms but her fine motor skills have improved. She is much chattier. Whether that is from the improved sitting or because the 'distraction' of her legs has been reduced I don't know. She is much more comfortable in general and sleeps better.
I am hesitate to give advice about someone i haven't met but If I was in your position I would definitely consider it. It sounds like surgery is in your DS's future SDR could mean just one rather than a series. From my experience it sounds like moving, handling and positioning could be made easier. He could be made more comfortable and through that help to make the on body sign language more easily understood. It is a serious procedure however and your DS is older than my 5 year old DD. But I am struggling to think of any negatives after the initial first couple of weeks.
Wow, that is a long post but I hope it helps and please feel free to ask more

[millienmaxmummy]

just popping in to say hi all its my first time here, my 8 month old has just been diagnosed with spastic hemiplegia cerebral palsy. He is doing good rolling over and sitting up and even has a vocab of 5 words.am so proud of him, from the first prognosis of him when he was born he wasn't expected to do anything well he's sure showing them! My lil soldier keeps on fighting

[inhibernation]

Hi all

Early support in my area is the allocation of a coordinator/key worker who supports parents and coordinates MDT meetings bringing together various professionals involved in the child's care. It was a great help to us at the beginning of our journey, soon after discovering dd has CP.

Re bikes - dd has an ordinary bike with stabilisers. She has lycra splint socks during the day so can wear ordinary trainers. The bike has toe caps on to help keep dd's feet in. They do come out now and then. But it's been too bloomin cold to go out on it for ages :(

Has anyone heard of halliwick swimming. I really would like to get swimming lessons for dd but am wondering whether this type of tuition would be better for her. Can't find any tutors in my area unfortunately.

[inhibernation]

Welcome millienmaxmummy

I just realised I missed loads of posts on here because my pc formats them differently.

Re SDR....please do not be discouraged from considering this just because your child's Paed/GP/Orth dismissed it. I'm not saying you should ignore what they say but medical advice like any other is not always correct and often further research is necessary. Think some people might have initially thought SDR was too drastic for dd but most have come round to the idea now that they understand more about the procedure and indeed the course of the condition itself.

isw - glad dd is doing well :)

hairy - hope ds is still doing well :)

sneeze - how is dgs getting on with the lycra suit?

[sneezecakesmum]

Hi. DGS has a 2 day old baby brother so we have been busy here! Mummy with c section but all OK after last time's trauma

Re the lycra vest. It's a SPIO vest from USA so not supportive as in a corset type garment. We used it on DGS when he didn't go to nursery as his physio said she wasn't keen because he needed to build up his weak trunk muscles rather than rely on lycra and she sees him in nursery. Anyway we noticed a definite improvement in his unwanted movements and much more stable in sitting upright. Anyway we did fess up to the physio and she was fine with it
It's for proprioception not support so that was ok!

Been all skewiff for the past few weeks as DGS now has a 2 day old baby brother and DGS goes to nursery 5 mornings so it was too much for DD with the bump to get it on, tube feed, struggle with a heavy 4 year old into the vest, but we hope to get things back on track. He is also going to start a medication to help with his dyskinetic CP so fingers x that he can start wearing the vest again and benzhexol helping. He has no significant spasticity so ops are not in the equation.

Would definitely recommend the SPIO vest for weak trunks. It helps with arm movements too. Only drawback is its slightly warmer (though nowhere near as bad as we thought) than a normal vest, as DGS gets very hot because he uses so much more energy than is the norm.

[amymouse]

So excited; today we got a kaye walker! I was really apprehensive, but DD had it sussed by the time the physio left. Since then, all she wanted was her "wheeees" (wheels)! So proud of how well she has taken to it. On the slight downside, we really have to up her physio regime as her hamstrings are really tights, an impacting on her pelvis and sitting, since the last string of growth spurts. But we have been accepted for another 8 weeks of rebound & hydrotherapy which is brilliant. We're about to move and once we're resettled I'm interested in doing some proper research and enquiries into some alternative things. Does anyone know of anything north east/north based? I know there is conductive education in Durham but I'm not convinced that is for us. Hope everyone else is gearing up for some serious easter egg consumption!

[sneezecakesmum]

Fantastic news with the Kaye walker amy . The tightness is awful with growth spurts. Does she have Botox? DGS has dyskinetic CP so he is all balance and coordination and fluctuating tone, very frustrating. He took to his Kidwalk walker brilliantly after struggling and hating his rifton gait trainer. His feet go flat to the floor more now and scissor less when we support him in walking. Only trialing it was a few weeks so quite amazed. The right walker really gives cp kids a new outlook on life.

[thereonthestair]

Ds also has a Lycra vest, be hates it but it does help stop him scissoring when he tries to walk. Apparently the research shows that it doesn't make the children warmer. Given the truly crap weather I am not sure I believe it though.

Amy great news with the kaye walker. I hope she continues to love her wheels. I am currently trying to persuade ds to use his to walk to nursery. It's about 300 -400 metres i would guess so not far, but so far even with out and out bribery he is managing about half the distance. I then end up carrying him, the walker and whatever other crap he's taken or found (yesterday was stones !)

We are trying to get ds onto a trike we got an imp, but it's going nowhere fast, and dh has decided, in a very dh way it's because the trike isn't right somehow. Of course he won't say how apart from perhaps it is too big. He is now going on a out a tomcat tiger, because of course that will make all the difference, I know we aren't poor but throwing money at things doesn't miraculously come up with a solution.

[alwayslateforwork]

Oooo, I've missed loads!

Squeeeee at dgs having a brother! How lovely, and am sooooo pleased it all went well (and with the CS etc. sanity rules) how is he finding a baby?! Congrats sneeze! (And grandma!)


And yaaaaaaaay! For the Kaye! Dd2 loved hers. Proper loved. Gave her a whole new sense of the world. Massive confidence boost!

Such exciting times!

[sneezecakesmum]

Thank youalwayslate giddypants aka sneeze is well but tired! we have both put up pics

thereonthestair. Our OT organised a day for all the reps to try out different trikes with other kiddies. They looked at things such as the leg pattern and unfortunately it was more complicated than we imagined to get the right size and pedal pattern for DGS. 2 were perfect so we got the quest 88 Kitten. It is fabulous and DGS can pedal up a storm which amazed us as the kid is totally without coordination!!

He is getting on amazingly well with his KidWalk even with the wrong chest piece and no leg guides (we looped some webbing round his legs and it does ). Its just to trial so need to get the physio to OK this expensive bit of kit.

Also finally started on his trial on benzhexol and I am sure i am just imagining his hand is steadier. Yes I am, as its only a week and he is on a starter does of 1mg twice a day increasing weekly on increments of another mg up to 15mg a day..... So I am definitely just imagining it!

[alwayslateforwork]

Aw, dd2 had a kitten. she loved it. I didn't know she had nc'ed. Will go hunt for pics

[alwayslateforwork]

Oh my life. Is there anything cuter than a newborn?! he looks a good size!

Congrats all!

[sneezecakesmum]

Poor giddy spent 8 hours on the baby ward as newborn was sleepy after upchucking and wouldnt wake to feed. 8 hours later and lots of tests he decided to wake up again and was bright as a button!! I think the minimal crying, lots of sleeping, good feeding is called......normal? Not something we know anything about after DGS

[alwayslateforwork]

What a stress! Glad all is ok - tis whole new ball game!

[alwayslateforwork]

Dd2 was asked to be a flower girl!

There will be three - and another little girl with cp, too - I am chuffed to ribbons!

[sneezecakesmum]

keep looking for a like button! Too much facebooking!

Anyway a definit 'like' for DD2 being a flower girl

[alwayslateforwork]

I know, it's just so 'normal' and so absolutely exciting for any little girl!

It's the wedding of her adaptive ski instructor, who she has been desperately in love With since she was 4. of late she has been v understanding that he is marrying someone else - but will continue to adore him from afar ;-)

[Dev9aug]

Congratulations on the new arrival sneezecakesmum.

Congratulations to your little girl as well alwayslateforwork. And yes to getting really excited about normal things.