support/information sharing thread for parents of children with Cerebral Palsy

[inhibernation]

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA

now I've been looking through the R82/snug seat catalogue... I think I need a new wheelchair rep - tilt in space and big wheels available here. Thanks for the tip sydney

Hi all! Have now printed off all DLA for
and and have booked the health visitor in for next Friday to help me fill them in . I have been reading your posts about footwear and was wondering if your DD/DS have been able to wear "normal" shoes for short periods as we have some weddings coming up and wanted to put my DS in some nice Clarks shoes for just one day at a time instead of his peidros. He can't walk at the mo so it won't affect his mobility, like falling or anything. But it would be nice to have him in something else other than peidros as he as never worn anything else. Thanks

We put DS in some hushpuppies when we went to my nan's funeral, I thought as he wasn't walking just be in his buggy then there was no harm.
And for your list:
Sneezecake/sneezecakesmum DS/DGS 3YO ??Spastic Quad, but more Athetoidy than spastic.

oo, is he 3 now, sneezecake?! i must have missed his birthday! (or forgotten... in my head he was still two!)

Clearly I need to look around a bit. I'll take dd's new splint with me when we get them and try it out without dd. Less stressful!

My db got married recently and dd was a sort of flower girl(!). We put satin ballerinas on her which were supposed to be just for the ceremony but dd, being quite vain, insisted on wearing them much of the day. Managed to put her splints and boots on later on in the evening, distracting her by putting in some different hair slides I don't think it will do much harm just for one day. Hushpuppies are lovely shoes. dd had a white pair. They were lovely for about 2 days before the front became black. And before anyone says why on earth did I buy white.......it was all that was left and I had to find something in a hurry on the day we received her first pair of splints.

nearly 3 and half my baby all grown up!

I love hushpuppies, we have a discount shopping centre with a HP shop, oh how I love to shop!

bless him!!!

jake, our orthotist strongly recommended spendind a little time in ordinary shoes, as long as there was not too much danger of falling - it's a fine balance between providing necessary support and letting joints work a bit harder which might help strengthen them... if he isn't mobile and won't be using a walker etc at the weddings, then there isn't really any reason he shou;dn't wear posh shoes for the occasion. tis a little easier for boys anyway, girls party shoes are a nightmare!! in the end we gave up and got dd2 black patent pidros and she used to wear them with party dresses and frilly socks.

Brilliant, hush puppies it is for our little man! Will have to get his feet measured tho as he has never worn proper shoes. Hope his feet aren't different sizes as his calfs and thighs are!

Hi everyone - inhibernation, you don't need a referral for conductive education, you just ring up and make an appointment for an assessment. You do have to pay but they also have funding available. Dd's sessions are currently being sponsered by an unknown benefactor you wanted to sponser a rainbow centre child. Rainbow Centre

Dd has splints and I think has funny feet as well (we all have a high instep in our family) so finding shoes has always been virtually impossible. We have ended up buying in Hatchbacks from T&S orthotics. They are not cheap but they absolutely fit, you don't have to buy 3 sizes too big etc. We also have a pair of party shoes for special occasions because like other here, we figure that a few hours in shoes without support isn't gonna really change too much.

I received two letters today, one was From portage asking us to fill in a questionnaire on the term of support we had.

The other was the notes from the pre school liaison group. I don't know where to begin, the information that they have discussed about DD is all wrong, the names of her therapists are wrong, the level of function she has is detailed wrong, they've said that we are getting adequate support with portage, physio, OT. We have seen or heard from physio since October, portage finished before Christmas, we have only seen OT once. They say that physio is arranging a joint meeting with us and OT, but the letter I got from the OT yesterday with exercises for DD on say we won't see her again until the summer. The letter also came with a book with loads and loads of services in for pre school children, I couldn't believe it, I have been begging for support for her and for me to be told nothing.

The exercises we got from OT are just laughable, they are completely unsuited to dd's age (17mo)' I took the info into her nursery and they said a 3yo would be hard pushed to do them, let alone do them regularly as targeted therapy.

We have Brainwave in eight weeks. I hope they can help us.

slowburner - that is terrible Are you going to complain? If so, I'd advise you complain to the directorate or PALS rather than leaving it at a local level. That said, I still haven't got around to complaining about the way in which we were fobbed off for months, despite being concerned about dd's motor development. I will do it - have just had other battles.

Slowburner that is really shocking and inadequet therapy, they bangon about early intervention then with hold it, definatly make a complaint.
At a minimum both OT and Physio should be visiting once a month portage weekly unless she has started nursery.

DS loves brainwave (due for reasessment in march) they set a short programme about 20-30 minutes a day which is really managable, even if you do 3 blocks of 10 IYSWIM we have seen great progress in DS core strength (lost of sitting on balls lol) I hope it works out well for you and youe DD

Thanks for your responses. When we saw the paed back in November he was very cross about the lack of physio involvement, he was also clearly unimpressed at the physio labelling hemi CP (she was intending to discharge DD over the phone, only saw us due to paed asking) he feels it is just too soon to dx, that's not to say it won't be cp and DD does has significant shoulder stiffness but he thought the physio had stepped over the line.

Doesn't get her any closer to therapy. We see him again end of february and I hope this time he can ask for different physio. One thing that they did say in this letter was that DD's nursery can apply for up to 5 hours funding a week, I am going to look into this and perhaps we can ask for that to be used to do her Brainwave programme the days she is at nursery?

Hope everyone's DC's are well :)

Slowburner my ds has 10 hours funded a week in his nursery through the early years foundation stage funding. We applied when he was 7 months old corrected (before the diagnosis of CP but as a result of some general delays due to him being prem and ongoing reflux issues) We weren't sure at the time whether we'd get it but it was a doddle. (much easier than DLA)

The form is short, but you need the nursery and the area senco to support it. In our case they thought it was a no brainer as it just meant they could get extra staff and what they do is put the temporary staff with the other childen and then DS keyworker gets training etc from DS physio and then does his exercises etc. If we did brainwave the nursery would happily do those exercises, but at the moment we don't as we are very happy with the NHS service we get.

In theory up to 20 hours is available for each additional needs child in our area, we only get 10 as DS does quite well and we want him to be normal too.

I think each EA differs. In my LEA children with SN are eligible for 10 hours funded setting care from the age of 2. slowburner - you may need to escalate matters to ensure you get the right advice. Might be an idea to put your request for info in writing - amazing how a letter can get things moving!

dd gets very little nhs therapy. Much less than monthly. We pay for fortnightly physio and I think the nhs are using that as a reason to see her as little as they do. Tbh, when they do see her they don't do much anyway. Just interrogate me about what I'm doing with her. OT have seen her twice. They envisage their role being more about setting support as they don't have concerns about her fine motor skills. They did say that they can step up contact if her fm development starts to become a problem.

We're on a waiting list to see someone at the Evelina. The waiting list is approx 4 months.

inhibernation - do you think the private physio helps a lot? We only get nhs physio every 2 months and like you, I don't know how much it is helping any more. We are absolutely skint but I'm getting to the point where I can't see DD making much real progress and I'm scared that she's coming up to 5 and I want to do everything possible to improve the neural pathways while her brain is still 'plastic'

We've just been re-referred for OT but they weren't much use when we saw them last tbh.

I know you didn't ask me about the private physio, but we have one as well as the NHS one. I would be tempted to ask how well you get on with the NHS physio as although I know mine is excellent (for which I am forever grateful) she will also tell me when she is recommending physio but has no money for it, and what she would do if money was no object. Sometimes that's weekly sometimes its not.

Overall we tend to do 6 weeks on 6 weeks off with the NHS and put the private physio in in the "off" weeks and I think it makes a difference, but I am not sure whetehr that's just a pyschologial for me.

Quick one from me as I'm going out soon.
Surviving - yes I do think it helps. But then, the private PT is more proative than the NHS one.
Thereitis - liked the last nhs one. Not so keen on the current one. As far as performance is concerned I'd say they are on a par.

Hi

Hope I can join in have been lurking/meaning to post. I have DD nearly 4 originally diagnosed as spastic quad but now diplegia. She is a chatty little thing who bunny hops around and would love to be able to run and or climb more things.
Have been reading through everyone's posts its fab to have so many different experiences. DD is in a mainstream pre school attached to a primary school she gets 1-2-1 support for the 12.5 hrs she is there. We also do a periodic placement at a Conductive Education place. She is there now with her dad. She goes for a 4 day placement 4 times a year and Saturdays every 6 weeks. While she there she has physio/ independence skills stuff in the mornings and hydro in the afternoons. I can not recommend this enough especially for kids in mainstream as she gets to hang out with other kids like her for 4 days. I am hoping this will be a nice little peer support network for her as she grows up. The physios from there also visit her in pre school and support her 1 - 2- 1.

We also do a program with Brainwave and have NHS physio once a fortnight. We have just applied for direct payments and will hopefully use that money to employ a physio or sports science student to do her program a couple of times with her to take the pressure off me a bit.
Ermmm what else? We have had Botox, the current round as made a huge difference, I am already dreading it wearing off. She wears AFOs when she is on her feet doing walking stuff and bare feet when crawling etc. She actually has hush puppies which she wears over her splints (they also fit just without them) Some of her specialists say AFOs etc should be worth 12hrs a day others, which I agree more with say to also do bare feet work to help with balance feedback etc

PHEW.. hello!!

ISW nearly 4 DD spastic diplegia

Hi, not been mumsnetting much recently as too busy but thought I should add me/ DS1 to the roll call! He was 3 in December, has quad CP (atypical apparently so neither athetoid nor spastic diagnosis ). Just started at a SN nursery, we also have private SALT as v little MHS provision, and he does SN swimming lessons which he loves and making real progress with, and is about to start music therapy! Hence me being too busy to post really!

ISW I'm really interested in the conductive ed you are doing - where is that it sounds really good?

Badkitty, DS1, age 3, quad CP

Hi isw and badkitty!

thereonthestair and inhibernation - thank you for sharing your experiences. I do get on well with dd's current physio - she's lovely and always positive about dd. I think it is more the slow progress that is getting to me - I just want a miracle to happen (have been spending too much time with NT children recently I think!!)...

Hello again badkitty. We go to the Craighalbert center they are fab

www.craighalbert.co.uk/

It is one of their Inreach programs

www.craighalbert.co.uk/dir_upload/PDF%202%20Inreach%20content%20parents.pdf

surviving - we use all of dd's dla to fund private physio. If you can't afford to use that pot of cash maybe you could think about direct payments so that you have extra provision. 2 monthly physio is a poor offering but I don't think I'd want dd to see her nhs one more often. She's the one who said that dd would never be able to walk to the shop - without even knowing where our local shop is!

whats direct payments? I've never heard of them, and how do you apply?