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Support/Information sharing thread for parents of children with CP - part 3

(746 Posts)
itsnothingoriginal Sat 29-Mar-14 17:11:41

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before smile

Summerdaydreams Sat 29-Mar-14 21:16:56

Hello to all on the new thread....

So Glad everyday that dd had a better lesson. And clever girl for doing 'monkey-monkey'. My Little girl finally got 'monkey-monkey' in her lesson yesterday for the very first time. I am so amazed by her at having mastered it [big grin] but I am obviously biased !!
Also she has mastered stepping along holding the sofa with lovely side steps. Sometimes she isn't as upright as I would like but it's work in progress. She can only go to the left mind (when she goes to the right her legs cross more often than not). Hopefully that will come.

Her sitting too has become far more reliable - all the above having happened since we started Bowen Technique. whether it would have happened without I don't know, but we will continue with it. Thank you for recommending.

everydayaschoolday Sun 30-Mar-14 08:55:27

Thanks for shiney new thread! Everything just started to happen and dd development really took off since we started Bowen. Glad it's working out for you too xx

goneHaywire Sun 30-Mar-14 11:04:28

Happy mother's day everyone!

Looking for a free family fun activity to do today.... Any ideas?

Galena Mon 31-Mar-14 15:51:34

'ello. Signing in before I lose this thread once more...

goneHaywire Fri 04-Apr-14 09:52:48

has anyone taken their dc to the Peto institute in Budapest? what was it like? Did you see any improvements in your child?

If not peto has anyone been to any other intensive conductive education facilities? apparently there are some in the uk.....

everydayaschoolday Sun 06-Apr-14 14:13:58

I think Sneezecakesmum has had conductive education input for her DGS, but perhaps UK based. Apologies if I have that wrong. I'm afraid I don't know what it is either Gonehaywire.

Thanks melmo and itsnothingoriginal for swimming 'congrats' lol smile

melmo26 Sun 06-Apr-14 18:17:12

Thanks for the new thread, couldn't find it myself lol smile
Thanks for the link everyday smile

summer glad dd is getting on great. My physio said side stepping is really important. Trying to teach my dd this too.

gonehaywire hope you managed to do something nice and fun for mothers day. Mine was spent scrubbing vomit out the beds and carpets. 3 of my 4 had a vomiting bug sad

Everyone is finally better today thankfully. Been a complete waste of the first week of easter holiday. Just need to try and squeeze lots of fun into the last week smile

everydayaschoolday Sun 06-Apr-14 19:57:14


Thereonthestair Mon 07-Apr-14 15:28:49

Hello everyone. Just thought I would check in.

Good news with us is that DS has apparently cracked toilet training (mostly) and in the end it was quite painless as he just got it when he accepted he had to(DS all over) but as with everything this leads to more questions which I would be grateful for any comments on. At home and nursery it's fine as we have a little heathfield chair which he is happy with. I tried a toilet in a restaurant at the weekend which was fine (ish) with DS holding onto me for dear life as his balance is still dodgy and adult toilets are obviously not that supportive, and disabled toilets are desigend for adults so the handrails etc are too far away for a small child who can barely stand. it kind of worked but I could not let DS hold me while directing the flow so to speak.... Any ideas. I am NOT going to just stay in to avoid the problem (and we are going on holiday soon) but now idea what to do when out and about. DH says we will try to get him weeing while standing which we know he can do but again worry about the issue of direction.

Secondly has anyone got experience with wheelchairs. We have an invacare junior 3 but can't work out how to push that while carrying both the walker and tripod sticks which we can do with the buggy. What does anyone else have. It seems stupid to just use the wheelchair as DS can walk with his walker in shops etc and I really don't want to deny him the opportunity to, but he does get tired, Physios are passing the buck to wheelchair services. Also the wheelchair is supposed to be light but I can hardly lift it, and given I dirve I have to be able to get it into the car. I am not going to get a bigger car as that does not work with the rest of my lifestyle and we do want DS to fit in with that as best we can, as apart from anything else we think that is what allows him to be the most included.

Galena Mon 07-Apr-14 18:44:04

DD sits sideways on the disabled toilet and holds the handrail which is now in front of her with 2 hands (if that makes sense?) At home we bought some of those vacuum seal handrail thingies which we put on the tiles, and we take them with us on holiday.

The Action 3 is bloody heavy! we have one and it's a nightmare to lift (cant help with carrying stuff, but I know some friends use bungy cords. How much support does DS need in sitting? we have a very, very light wheelchair we're looking to sell on, but it has no support for sitting. PM me if it's any good...

amymouse Mon 07-Apr-14 20:13:21

Well done on toilet training there that sounds brilliant.

Whilst on the subject of wheelchairs, can anyone offer advice? DD is currently 3.7yo and around 14kg, although quite tall. We use a Phil & Teds buggy and at the beginning of the year, physio referred us to wheelchair services as she suspected DD would soon outgrow it. The appointment has now come through for in a few weeks time and I have no idea what we might or might not be entitled to, or offered if anything. DD can walk independantly for a small distance, but tires quickly and frequently has periods where we are entirely reliant on the buggy. She is an ok sitter, but very often sits in C shape especially in splints and when tired. A Maclaren Major was mentioned briefly but it looks not particularly brilliant; we like to do as much stuff as possible outdoors and the wheels just don't look up to it! I don't drive but seeing as we live in a city with pretty good transport, as long as I can push it I'll live with it. What have others found?

Thereonthestair Tue 08-Apr-14 09:45:45

Thank you so much for the comments. Will get looking into vacuum seal handrails as we are just about to go on holiday (another thing I am dreading having bitten the bullett with toilet training but what is the worst that can happen!)

I am glad it is not just me that says the action 3 is heavy. I thought I was losing it when wheelchair services said it was lightweight and I struggle to lift it.

Have had a discussion with a private physio who agrees we need something small and lightweight and thinks the action 3 is as rubbish as I do. So yes please to the light wheelchair - I have sent you a PM.

amymouse the physio said a wheelchair for us, but now also saying a maclaren may work in some circumstances. We are also looking at the special tomato and the bigger baby joggers but not yet found any feedback for them. I suspect we will end up with a mixture of a special needs stroller and a wheelchair depending on context

Holidaybound Tue 08-Apr-14 17:21:27

We use a swifty buggy that was provided by the wheelchair service. It's pretty good in the woods, beach and sea (oops!), but the front wheels don't lock so it does get stuck on bumps that it would otherwise be fine with. Im a midget so find it heavy/awkward to lift, but it seems an ok weight when pushing.

Congrats on toilet training to thereonthestair's DS!

Kaffiene Wed 09-Apr-14 15:05:56

Hi All
GoneHayWire There CE centres all over the UK. There is one in London - maybe called Small steps or something a quick google should bring it up. The PACE centre in the South East I think. Heel and Toe in Durham, Craighalbert in Scotland. Lots doing holiday or periodic placement programs for kids in mianstream or are special schools. Definately worth looking into for helping teach Independance skills.

Ah the good old wheelchair vs buggy and how the heck am I supposed to carry a walker too debate.
We have always had a variety or wheeled options depending on what we were doing. I hated the mac major because I couldn't push one handed and rubbish on anything even vaguely bumpy but it does fold small( but long) Special Tomato EIO is a good "town" buggy and you can tie on a walker quite easily but doesn't fold down small OK on paths but not for off road. SN babyjoggers massive but fantastic for true outdoors, beach etc doesn't fold down too badly.
Wheelchairs Action 3 is a nightmare. Some lighter ones to look into are Ottobock Bravo Racer, Kushall and Quickie Simba or Neon. Lots of options for seating for them. We will be selling a purple Quickie Simba once we get our new one.

Well done with the toilet training. DD also clicked overnight suddenly. She also sat sideways and it does get easier as they get bigger!. We use a family toilet seat at home (it has a "normal size seat and a smaller seat all attached to the normal basin)

itsnothingoriginal Wed 09-Apr-14 22:32:19

That great news about the toilet training thereonthestair smile

DD also sits sideways on the loo with a footstool holding onto the bath at home and it is still a problem when we're out and about when nothing to hold onto. Usually she holds onto me but I would guess is trickier with boys and standing up! She has been known to fall down the loo on a number of occasions at school shock OT do apparently have a portable support seat that was mentioned to us?

inhibernation Thu 10-Apr-14 19:13:36

I've missed loads. Part 3 - wow.......haven't we come far :-)
Great to read the progress your little ones have made.
Not too much to report here. dd is 6 months post SDR and continuing to make good progress. We saw the surgeon who performed her op a few weeks ago and he's pleased with her progress - as is the Neurodisability Paediatrician. Highest point was when she ran with her class for sport relief. She kept going for 30 minutes!

inhibernation Thu 10-Apr-14 19:49:31

Apologies for not maintaining the thread. Not long after starting it we found out about SDR and that took over. I'm glad you have all kept it going.
Have caught up as best as I can. dd did water babies for 2 terms. It did help but I felt she needed a smaller group. She's now in a NT beginner improver class with 3 other children. She can now swim with arm bands, which is great to see. She also does RDA and loves it. Did CE for 2 years and think it helped in conjunction with everything else we did. Other things that helped - cycling and trampolining.

goneHaywire Fri 11-Apr-14 00:38:23

Thanks Kafiene

anyone heard of or used The London Centre for children with cerebral palsy?

Sneezecakesmum Sun 13-Apr-14 11:47:40

There. Well done with the toilet training. It's not doing the business but all the equipment, balance and stuff that cause the difficult. The Bumbo toilet insert is lovely and soft and portable. DGS hates hard plastics on his bony little bum!
Amy. How about a free mcclaren major for transport on buses and around town. And buy a special tomato jogger which is big but glides like a dream over all terrain. They come on the market used and are usually in good condition. Ours is fab for the school run.
Inhibernation. Fabulous news about the running. Such a brilliant operation.

whereonthestair Sun 13-Apr-14 13:30:04

Hi. Slight name change due to the password not resetting..... So am posting so I don't lose this thread.

melmo26 Sat 19-Apr-14 18:53:17

Hi all. How are we all doing over this Easter holiday?

Dd is making great progress with walking. She is now on her feet most of the day. She walks with a stiff R leg which physio says is coming from her hip. But is walking. Just hoping it does not cause any problems in later life.
Dd has started climbing the stairs, one handed! She uses her legs to push and the left hand to keep balance.
We finally got an app for new paed cons. Also we will have our first app with an OT the same week. Things finally seem to be getting there after the move. smile

inhibernation Mon 21-Apr-14 22:49:02

Melmo - fab news about dd walking and stair climbing :-)

Bowen technique - could the parents using this please say how it's helping. Wondering if it could help stretch tight heel cords.

Sneezecakesmum Tue 22-Apr-14 10:29:58

I've got as far as contacting a local Bowen therapist but haven't yet arranged a session! Been so busy setting up an ipad with proloquo2go, getting blended diet into school, arranging talk tools assessment and therapy! The Bowen kept slipping down the list, but all the other stuff is up and running so I will phone tomorrow. Neuro appt today so busy again. I can only cope with one thing a day! grin

Sneezecakesmum Tue 22-Apr-14 10:30:52

There is an exercise for heel cords but I must get on now, so will look it up for later!

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