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

(946 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 Sun 06-Apr-14 19:56:27

smile c'mon over….. smile

melmo26 Sun 06-Apr-14 17:58:42

Thanks for the link everyday been searching for it but couldn't find it smile

everydayaschoolday Sun 06-Apr-14 14:12:29

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

OK, I'm on the new thread now….linky….


melmo26 Fri 04-Apr-14 21:22:10

Hi everyone, just checking in to say hi to all newbies ( still feel like one myself smile )

Been thinking about shoes/boots for dd too but she is in no way ready to walk outside. Bare feet indoors for dd.

everyday great about the swimming. Glad you both enjoyed it smile

cotta sorry can't help either. I'm in north Scotland but I hope you get the help for ds

gonehaywire I don't even know what conductive education is smile so I know I will be of no help smile

goneHaywire Fri 04-Apr-14 09:56:43

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

If not Peto, had anyone been to another intensive conductive eduction facilities?

everydayaschoolday Tue 01-Apr-14 17:50:57

Sorry cotta, I'm not in your area so can't help. Hopefully someone else will be along shortly xx little bump for you smile

Cotta5 Mon 31-Mar-14 10:30:49

Hello all!
I wonder if anybody can advise me on independent PT and OT in Bristol area please. I need to have independent reports done as I'm going to fight for a decent school for my son . Any pointers?

itsnothingoriginal Sat 29-Mar-14 17:15:04

.. oh and glad your water babies session went better yesterday everyday smile

itsnothingoriginal Sat 29-Mar-14 17:13:35

New thread started!!

everydayaschoolday Sat 29-Mar-14 08:58:06

We had a better Water Babies session yesterday. Third instructor in 4 weeks though - but I liked this one blush. Didn't go too fast and she asked about our individual needs and progress smile. DD2 did some fantastic underwater 'swimming' - propelled through water to instructor and can do monkey-monkey on her own (hold onto the side and hand-step along the edge).

Yes, I think we're fast approaching new thread time itsnothingoriginal. Would you like to do it, or any other takers? I'm too scardey-cat to assume such responsibility blush grin

itsnothingoriginal Thu 27-Mar-14 13:50:13

I don't buy DD shoes over the internet as she has a myriad of fitting difficulties not least the low tone/CP/hypermobility stuff!! We go with John Lewis or I bought Kickers and Babybotte makes from Charles Clinkard if you have one nearby?

Is this thread running v slowly for anyone else's device? Wondering if it's the length of time to download now we're up to over 900 posts - shall we start a new one???smile

Galena Thu 27-Mar-14 06:52:22

Yeah, C means the children's sizes.

We bought them online as we could send them back if no good. We got the snowboots from Mothercare though...

goneHaywire Thu 27-Mar-14 01:13:43

galena I'm a bit confused by the sizes. dd usually wears infants size 2.5 or 3 would that mean she needs C3 in these boots?

goneHaywire Thu 27-Mar-14 01:08:56

thanks to all.

I'm just looking at everyone's suggestions online. Did you all but of the net? Anyone know of shops that stock these, so dd can try them on?

itsnothingoriginal Tue 25-Mar-14 22:18:05

Happy CP awareness day everyone! Been wearing green today...

gonehaywire Re footwear - when DD was younger and just trying to stand/take supported steps I bought Babybotte shoes which were great - pricy but very supportive and more flexible than Kickers which DD found too stiff.

Is getting harder and harder to find supportive shoes as DD gets older - it's all about fashion for older girls and I see battles ahead with DD sad

Hi eyelet and welcome to the thread smile My DD is 6 and also has CP following a placental abruption at term. She's mildly affected - mostly balance and fine motor skills.

Galena Tue 25-Mar-14 10:21:07

These were good - held foot and ankle nicely.

Galena Tue 25-Mar-14 10:17:44

we got velcro snowboots for DD when she first started walking, but tis the wrong season now.

We also found Karrimor walking boots which were fantastic cheap on Sports direct. hang on...

Everysilverlining Tue 25-Mar-14 09:51:22

when ds had ordinary boots we tended to go with ecco

goneHaywire Tue 25-Mar-14 09:49:26

Does anyone have advise on suitable footware?

dd 21mo wants to stand up and take steps but she tends to walk on the outside of her feet with her ankles twisted. Her physio said to just get some ordinary boots. But what boots should I be looking at?

Eyelet Sun 23-Mar-14 22:02:41

yes she is verbal although delayed. We've also had seizures cause regression so some skills shes had to learn more than once.

Galena the videos are wonderful! I am amazed how well she is doing and she looks fitter than you judging by all the huffing and puffing lol grin

Hello eyelet. DGS was also a placental abruption baby and has moderately severe dyskinetic CP. He is cognitively ok but very little speech. We are looking at AAC at the moment. Can your DD speak?

Eyelet Sun 23-Mar-14 21:01:20

Hi - I've been pointed over here after starting a thread, our dd has CP but it is now considered mild (she has had transitional tone and steadily improved), now she has hemi but full range of movement except when tired or ill. Started with very very stiff shoulders and no use on her RS.

We used to hope all would be well cognitively but we are having to accept that it is not. She is an exNICU baby, born at term but after a placental failure suffered hypoxia. She has quite severe microcephaly.

amymouse Sun 23-Mar-14 20:34:05

Wow Galena, how well is your DD doing! I take it SDR was worth it?! Really interesting she gets less tired. Must read up on it again.

Beagle I also had counselling (DD was also prem and had a traumatic birth) and it REALLY helped. I also took antidepressants alongside it until I felt less anxious/more able to cope. I still have wobbles, but am in a much better place. When we finally got the diagnosis at 2 I felt hit like a ton of bricks, even though I pretty much knew it was coming.

We have just had an appointment through for an assessment from Wheelchair Services. Really really mixed feelings; on one hand I am glad that help is available but on another I suppose it is yet another reminder that nothing is going away! It really doesn't help when well meaning friends and family say "what is the point; she can walk now"-and forget that she tires so quickly and her walking can be very inconsistent.. Some days she wobbles along and others can't do more than a few steps independantly We've had one of the those weeks, where DD needed far more support than normal walking so it is good timing really especially as our Phil & Teds is looking more knackered by the day!

Summerdaydreams Fri 21-Mar-14 21:10:46

We have a corner bath seat: here

We got it through our OT. It is perfect it means little summer can share her bath time with her big sister! And makes life easier for me too ! Would defo get onto your OT for one.

The realisation that your child is more behind than you thought is always hard. I think it's healthy to cry and let it out. Most parents here has been in denial at some point or another and to varying degrees. I know I have and probably still am to a certain degree, I hate the thought of my daughter being classed as disabled, because in our eyes she isnt, she is our little summer who is going at her own pace.

Galena wow those videos are brilliant. I can see why You are so so proud and over the moon. An inspiration. If my dd is able to do that one day, I will be on top of the world.

everydayaschoolday Fri 21-Mar-14 19:40:09

Hi galena! Great to see you again. Thank you so much for this thread - like for many others here, it's really helped me in so many ways xx thank you.

The footage is superb. Well done to your dd! She really is a star smile glad it's all gone so well post op. She looks fabulous x

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