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

thereonastair - great news that epilepsy has been ruled out Also good news that ds is being d/c to community. In dds case it was too early - d/c at 10 weeks in outpatient appt. She was barely term. dd is only gettting lycra shorts - not a suit. She should have got them months ago before she was self-mobilising to help with gait. Orthotics waiting list is usually quite good. Longest we've had to wait is 4 weeks.

Madwoman - I know. It's utterly draining. It's getting a mention in my complaint letter.

Hope you don't mind me intruding, I am not a parent of a child with CP. I live not far from the Bobath Centre and I read in the local paper that it is having great difficulty staying open due to referrals (funding) having dropped by about half over the last year or so. Don't know if any of you know anything about it, have been there, know about more difficulty in getting referred?

ditto thereonthestair re epilepsy (thats one thing more no one wants to deal with, we have enough already thank you!)

We would quite like a lycra suit but have to wait til DGSs 4! Say hes not ready yet, and i think they may be right.

We do have tons of equipment however, most from the PT/OT departments..DD and DSIL had to buy a new house to put them all!

I found it quite easy to make a wedge (custom size). Went to a furniture upholsterer, few pence or free for some thick foam and just sewed the cover. v easy tbh

It is not good news about the bobath centre! We have never been there but go to brainwave.

I watched that programme inhibernation - great to see a positive focus on disability after all the negative media attention recently! Glad he is able to follow his dream and I hope he makes it in racing this year.

So pleased epilepsy ruled out thereonthestair - that must be a real relief

Our turn to be poorly now and dd been having temps on and off for a week Lost all her strength again and just after she learned to hop as well (6 months of trying, yay!) so fingers crossed for a speedy recovery..

inhibernation

Get an ot to come out and make a reccommendation to your local authority that you need the stair hand rails as a matter of urgency for health and safety

adapations made under a disabled facilities grant for children are not means tested so are therefore virtually always immediately granted

Should add that it is usually a different ot that assesses for adaptations -from ss not health! Or at least it was for us, again it might be a postcode thang...

We have only ever known the one ot for our dd but will say that knowing an adult with disabilities they get passed from 'health ot' to a social services ot both 'arguing' over which budget things should come from.....

and it isn't their own.... dd2's very sensible therapists told us to take everything with us when we moved, as it would just take far too long to get it all set up again in new places. they said don't try and do it officially, as the paperwork is immense and someone will eventually say no (it's supposed to go on loan or whatever), just to take it all, and work out how to get it back if we ever didn't need it...

she also recommended that for adaptations we tried to get removeable/ movable stuff for the same reason., hence the toilet surrounds etc instead of fixed grab rails on the walls...

Hello everyone! Havent been on in a few weeks now...been a busy busy busy Mummy...but thought i must take some time out to catch up on how everyone and their little ones are doing, so just had a read back through the posts :)

madwoman - did look like we all lost the post for abit, as it hadnt been used in a couple weeks or so...but i guess we were all just very busy mummies! Glad to hear about your good week a couple of weeks ago and going to see the physiatrist and its brill that the casting all went well! :)

isw - welcome...and thankyou for the recommendation on the chair. We have infact just recieved a supportive chair for home and nursery, its called a star x series- not sure if youve heard of it? Her OT came to measure up the table heights at home and nursery and our little ones measurments in January and we have just last week received her seating...but atleast its here now and definetly worth her having, she sits up fantasticly in it!
I dont know if its the same with your little one?...not sure how old he/she is? but we've found our dd feeds herself so much more confidently now she can sit up better. Before, compared to her twin and her other peers at just over 2 years of age, she could use a spoon/fork and get it to her mouth...but it would always be quite messy (although i did used to leave her to do as much as she could and only help her at the very end, so she was getting her independence) and she was always quite prominently left handed, which i thought was normal as her identical twin is right handed so just thought they may be 'mirror image' as some twins can be! However, since shes been using her seating in such a short time, she is now so confident in using a spoon/fork...can pick up food and take it to her mouth...using her right hand!... I just cannot believe how much of a difference it has made! I think looking back, she probably used her left hand before as she was using her right hand to support herself and her sitting!
Would love to hear more about your little one... :)

hairy - so sorry to hear your little ones SDR had to be cancelled :( must have been disheartening when you were so close...and now having to wait for another date...but you cannot plan these things and better to be safe if all wasnt well. Hope all is beter soon with your ds and you get another date through asap...

sneezcakes - just read your post about the brainwave... glad to hear you got lots of good advise, but sorry to hear that the progress wasnt as good as you hoped...but like you say, all in the right direction which is good...even one step in the right direction is better then any steps back! :) What a lovely lovely sponser also! :)

inhibernation - hello again! :) so sorry to hear about dd being poorly, how awful once again...poor thing, so not nice for them...or us mummies infact! Ive had teething twins, one of which has been up and down with temps/coughs/being sick etc etc over the last few weeks...such hard work! Which is why i havent been able to get on here in a little while...so i guess we have been in the same boat!
Ive just been reading through your posts with madwoman about equipment! I could rant on forever about how rubbish it is our children need to wait for things...everything is a blimmin waiting list and it is very very VERY frustrating when all you want is the best for your child...and for your child to have the things they need when they need it! Im always saying how i wish i were rich to be able to get the things my dd needs straight away! Its as i say so fraustrating that you are told your child needs this equipment to help them and then told they'll have it in a few weeks!...why?!...why should any child have to wait for something that is so essential and so important to benefit them! I cannot fault the NHS in the way they have lead us in the right direction...from us having concerns about her development and raising these with her consultant, to her consultant refering her to a physiotherapist for a development review, who then diagnosed her cp and refered her to others in the 'joint agency team' such as her OT, who has looked into and sorted out what equipment she will need..and also a portage worker who went to see her in her nursery environment. But on saying this, it has been a waiting game for everything!...she was on a waiting list to see a physio...then and OT...her boots and equipment shes always had to wait weeks for :( She had physio on the NHS every couple months i would say and her physio is brilliant with her and i cannot fault how lovely she is...but again i would love for her to have her physio more regularly! Inhibernation, i see you use dds dla on private physio...we were thinking about doing that and have now decided to use a little of it on starting up gym club for her and her twin, it would benefit our twin with cp but also be very much enjoyable for her twin...and again her twin will probably encourage her and spare her on as shes always done!
Going back to equipment...our dds physio first tried her with a kaye frame in Oct and as she did well with it at the appointment, we were told she was going to order her one and it would be with us at her next appointment in Dec (so i was getting excited thinking that was the day after her 2nd birthday and how lovely to see her big day with getting her own frame and learning to walk!) anyway Dec came and went with no frame. Her next physio appointment was in Jan and again we were told her frame would be there for her...no still no frame!!...since then we've been waiting for a phone call to say its in, but we havent had one and her next physio appointment is fast approuching on friday and i just so hope it is there for her! Her physio lent her a kaye frame at her last appointment in Jan, as i think she could see i was quite upset that she still hadnt recieved one...but although she does well with it and can walk in a straight line with it, she cannot maneuver it that well as its a size bigger than the one her physio has ordered for her!
Also with seating!...i was just telling isw. Her OT measured up for seating in Jan...we were told it would be a 5 week wait tops!...7 weeks pass and still no seating, so i phone and they are there and they are sending them out...we then recieved them within a couple of days and a week later her OT came to show us how to use them and fit our dd in it well etc... so 8 weeks after they were ordered she finally gets what she has needed for ages!
Ummm what else can i rant about lol...im on one now!
Oh inhibernation i saw you were asking about a wedge... we have one on loan from our dds physio...but i know sometimes with equipment that is loaned, they dont always have it there and its already out with people...i think we had to wait from one session to another till they had one back from someone.
thereonstair - i see you wrote about a 9 week wait for AFOs...i just think its so fraustrating and so unfair our children have to wait for these things that are so benifitial to them! :( but on a brighter note, its brill that you had epilepcy ruled out!...and so glad to hear your ds has got used to his kaye walker... my little one still isnt over confident and enthusiastic about it!...but hopefully we'll get there! :)

Sorry for the long reply everyone!! Have been away for a while and like to try and reply to you all :) xxx

I think the waiting is there to try us. One thing I would just add though, is that having money doesn't actually avoid that (apart from the physio) We are very lucky in that we are actually quite wealthy, some peoplemay recall that I agonised over the DLA application because we don't really need the money and could fund everythig ourselves. However other than the private physio we can't actually pay for anything even if we wanted to, as the providers often only provide to the NHS. I Asked about it for the lycra shorts, and was told the private wait list was 4 months, they'd use the nhs measurements and the fact DS is not yet 2 and would have andin fact did grow out of the shorts in less than 4 months was irrelevant. Ditto orthotics, and adaptions, at elast round here. Maybe that's because the NHS is good round here. So its the NHS or nothing for us

thereonstair thats very interesting to know that the providers often only provide for the NHS...i was just under the presumption that you could just order equipment etc yourself online and you would get it like that!...thankyou for clearing that up for me...makes me feel not so bad that i cant do anything other than wait for things my little girl needs and get very frustrated by it!

Quick one from me - will be back later.

I asked about the wedge - they said they don't loan them and we'll have to buy it ourselves. So my borough offers a diplegic pre-school child less than 4 sessions a year of PT, a standing frame and a kaye walker. Thank feck for DLA as who knows where she'd be otherwise.

That's totally crap.

Thats total rubbish :( How bad for your poor dd and how very frustrating for you. . . It makes me so cross!
So my dd had her physio today, hoping we would finally get her own frame and its still on order!. . .October was when they said they would order her one and shes had 3 sessions of physio since then!! On a brighter note she had a fab session today and was so happy and co operative! :)

Little DGS is off for his PEG tomorrow. Hate the the whole thing but know it needs doing. At paed meeting this week he managed to grow 4 cm but not put on any weight. He is eating really well (always does this with a growth spurt) 3 x meals + little snacks. All calorie rich! No matter what we do he just hovers below the bottom line so hope the PEG can give a calorie boost overnight and still maintain feeding in the day. Knowing him he will just not bother eating in the day as I'm convinced his body has a weight limiter built in! And its set to ultra skinny!

He doesnt have any extra wasted movements using up the calories, and although he works much harder to physically do stuff, he is quite immobile a lot of the time, and he is not a genetic CP so why can't he gain weight? Rhetorical question really, its just him I guess.

Expecting his physical improvements to go backwards. Expecting him to be anxious again after being much less sensitive. I know he will bounce back in the end, but feels like one step forwards etc etc... he's been such a happy boy lately Sometimes I hate CP so much, or at least all the other crap that goes with it.

Hope everyone else is looking forward to the end of winter and sunny days and no equipment hassles xxx

we had the opposite with dd2 , which was quite nice, but utterly baffling. she would scream all day and eat nothing (and choke when we tried to feed her) but resolutely put weight on seemingly from thin air.

we actually only fed her at night for about 6 -12 mos, as her tone was too high during the day to co-ordinate a swallow and breathe. vampire baby. so maybe adding in the feeds overnight will do the trick?

hope it goes well today x

How did peg procedure go today sneezecakesmum? dd is also very petite. I used to worry a lot, but since we got cp diagnosis I am much less worried about weight. dd is tall but skinny. ds was similar, though on 50th centile for weight, 99th for height. dd was 75th for height and somewhere between 2nd and 9th for weight - but that was ages ago. Haven't weighed her in a long time. She is in right age for clothes but I have to get adjustable waistbands on trousers, jeans and skirts(not that she wears skirts much). Hope peg helps. Ikwym -I hate CP most of the time!

Thanks you both, he is doing OK, not as bad as we thought and pain kept under control most of the time. Had it done yesterday so the worst is over! He gets a bit panicky when he sees the tube apparently, but DD is staying the whole time and SIL was even allowed to stay last night after saying he would sleep in the car rather than leave as DGS was expected to be unsettled all night. Was not bad in the end though!

Your DD must have chunky genes madwoman, so funny that she fed at night only!! You were so lucky the poor swallowing did not cause her to need a peg. DGS is not a bad eater at the moment (is having growth spurt so thats probably why) but my two LOs at that age were very skinny so genes against DGS I guess. He's got a feed going at the moment to see what happens Really hope it does the trick and he stops looking like a starvation victim. In this age of obese kids I long for a roll of flab on him!! DD wishes she hadnt listened to the advice to fully bf for 6 months and started solids and formula top ups to boot! Still hindsight.....

inhibernation, your LOs sounds fine height and weightwise, don't give it another thought, as I say the CPs enough to worry about and work round, all the other stuff sucks! Feeling a bit better today, just want them home and weight to pile on

it was really deliberate. both we and the slt knew that if we had her swallow formally tested, we would be told she shouldn't feed orally. so, we , er, avoided testing and worked round it to give her long enough to grow and develop and get stronger. fortunately it was easier at night, so we had to set our alarms to get in all of her feeds during the silent hours. she did get aspiration chest infections, but the gp was v good about prescribing anti-b's and i really only had to call and say we needed a prescription and then just go and pick it up - we sort of got to the point we could tell when she was aspirating/ had aspirated so knew she would go downhill in a couple of days. and we were able to get enough into her at night to keep her weight gain.

it was a bit of a gamble but it paid off. i wouldn't encourage others in a similar position to do the same, but it was a solution in our circumstances and we had brilliant slt support right from birth.

good to hear he is recovering well. hope the feed stays put! how long will he need to stay in?

and small lol at chunky genes... i can't imagine where she got those from!

she's a skinny min now, to be honest. eating is quite laborious for her, but she manages enough.

omg that was very brave and a bit foolhardy, but you trusted your instincts and would have known when it wasnt working. DD knew it was time to give in when all the nursery bugs kicked in and major vomiting/fever episodes started. He would eventually not have the strength to recover. A senior slt assessed DGS swallowing but when she saw him drinking water from a beaker and tea from a doidy cup she wasn't bothered any further. He's never had a chest infection so far.

Coming home tomorrow! 30 mls an hour so far, doing a bit of eating and a bit perkier, very bored I think, but he 'd rather snuggle up and watch tv than do things so is in his element! Just hope he chunks up and has the dam thing out after the year rather than putting a button thing in, at the moment its a long tube hanging there

Eating's a bit of a chore for him too, but not helped by only having 4 molars!

Hope your DD getting on well with her (not so new) 1 to 1.

Yy, exactly. You have to make your decisions based on your situation, and we were just lucky enough that weight wasn't an issue. Fab news that he's out tomorrow and is tolerating some feeds too. I'd quite like to be bored and watching tv for a couple of days...

Ah, teeth. Seemingly ok, but some trials in the clean/decay area. She had titanium caps fitted to her molars two years ago to help preserve them. . I'm also putting off the dentist, but know it has to be soon....

Titanium caps make her sound like jaws from the james bond film lol! Although if theyre on the molars they wont show, which is a relief (weird pictures in my head tonight!) They can always put crowns on at some point I suppose? Are her adult teeth normal and were the baby ones dodgy?

DD said your little DD was a good size as a baby so that must have helped by being a good launching pad weight wise. DGS piddling little 4.1/2 lbs due to the crap placenta also caused the enamel hypoplasia. Your placenta must have worked well up til the last minute as enamel hypoplasia is caused by placental insufficiency. DGSs dentist identified it but the dental surgeon said it was breastfeeding caused them to crumble. Couldnt think of a polite way to say go boil your head so said nothing. Idiot.

Poor DGS. canulas in his hand and foot and a hole in his tummy! He's cheerful most of the time, but uncomfortable when the painkillers wear off. Wish they'd take the canulas out..I know from experience they sting! Can't wait for them to get home, being bored and tethered to a clingy non toddling toddler is a bit grim, the novelty wore of pretty quick.

yy. dd was 9lbs and just buggered by birth injury.
(they are just like 'jaws'. but we had to tell her they were shiny silver princess teeth.... )

Just wanted to say hi to everyone. My ds is 4 next month and we finally got our cp diagnosis last month (although I've been expecting it for a while given the intervention he's had over the past few years). All we've been told is that it's mild but ds has left side dominance and increased tone in both his legs resulting in him first wearing piedro boots and subsequently afos with wedges in his shoes. He's getting on really well and is fully mobile, it's just when he tries to run that you can tell something is not quite right. Not that he lets anything get to him, he just gets on with it and he absolutely loves his splints, more so now that he realised his cousins are jealous that he gets some and they don't!