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.

[Bedsheets4knickers]

Hi I'm looking for some support. My 19 month old is a tip toer. She's not yet walking is under paediatric physio. We have just done 6 weeks of serial casting on her legs. We are now waiting for bloods to be done. They are testing for muscle disease but have said it's more to rule it out. She said she doesn't think it's CP but I've stupidly googled it today. She ticks a lot of boxes. We are in night boots and gaters. Her left leg has been fixed by the serial casting her right leg is really struggling.
I'm beside myself with worry.
Has anyone got a little one with mild CP??

[Pumpkinpie11]

Cotta - I see a fab Physio in Bristol.
Google. "Wheen Physio for children"

[Ineedmorepatience]

Hi all I dont have a child with CP but am bumping for a new member of the board

[lawzthemase]

can anyone help?
you.38degrees.org.uk/petitions/operation-for-kailand-nhs-keep-your-promise?time=1398279641

[everydayaschoolday]

:) c'mon over….. :)

[melmo26]

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

[everydayaschoolday]

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 :)

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

www.mumsnet.com/Talk/special_needs/2039660-Support-Information-sharing-thread-for-parents-of-children-with-CP-part-3

[melmo26]

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

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 :)

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 :) so I know I will be of no help :)

[goneHaywire]

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]

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

[Cotta5]

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?
Thanks

[itsnothingoriginal]

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

[itsnothingoriginal]

New thread started!!

[everydayaschoolday]

We had a better Water Babies session yesterday. Third instructor in 4 weeks though - but I liked this one . Didn't go too fast and she asked about our individual needs and progress . 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

[itsnothingoriginal]

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???

[Galena]

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]

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]

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]

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

Hi eyelet and welcome to the thread 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]

These were good - held foot and ankle nicely.

[Galena]

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]

when ds had ordinary boots we tended to go with ecco

[goneHaywire]

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]

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

[Sneezecakesmum]

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

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?