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

[itsnothingoriginal]

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

It is a tough journey albaba, as you know this is the situation I am in with my dd. similarly my dd doesn't have stiffness either, she too had balance, co-ordination issues and weak core. I hate the fact that my dd will most probably need a wheelchair as this just shouts out 'disabled' and I don't want to think of her as disabled. But I am starting to get my head round it, maybe because at 2.10 dd isnt walking, it will be coming round sooner rather than later, it's acceptance which takes the time.

I think family members use the 'she'll get there' line because they don't know what to say, they want to help you, make you feel better about the situation when in reality it often makes it harder. My parents are similar, I remember telling my dad that dd had brain damage and thats why she was not walking etc, he was absolutely devastated and shocked, as if it was a sudden thing, out of the blue, he hadn't fully comprehended what I had been going on about for the previous year! For him I think he didn't want to think his DGD was going to have difficulties.
I find being blatantly honest with people about dd diagnosis helps. I don't want people wondering why dd isn't walking, running around, so I just say it how it is.

Not had neuro disability meeting, so can't help you on that one.

Also know how you feel Albaba. I dont want to believe that DS is disabled, even though we've just got the DLA approval through. I feel so sad for him. I'm sure this is all fairly normal, not that it makes it any easier whatsoever. Life's just shit sometimes. My hope is that DS learns to not take any crap off anyone taking the mick re him walking funny or needing to use an aid - a shame for children to have to learn that skill early but there you are.

Like Summerdaydreams I find being blunt helps quite a bit. I had been avoiding telling people about the diagnosis but I found it upsetting getting all the texts from extended family and friends saying 'how are you, how is DS, is he walking yet?'. So I have told most people now, which was hard but necessary. I just didn't want anyone to treat him differently and to continue to push him - in particular his childminder. Who we still haven't told.

Thanks girls for your comments. SUMMER. My dd didn't walk until about 2 1/2. We thought that she would never walk so don't be giving up hope. I hate the term brain damage. It makes me think of somebody maybe in a wheelchair or that has maybe intellectual problems. My dd looks completely normal and is really bright. Mobility is her only issue. Before she had her MRI scan she had just been labelled as having development delays. As far as I was concerned the MRI scan was just a formality so was gutted when it showed that she had white matter loss of prematurity and it was confirmed that she had CP.

BABS. I used to get that too. Is she walking yet? My dd at this stage was nowhere near walking so I used to palm people of with she just needs a bit of physio but we have been going to physio now for nearly 2 years! I find it really hard to be honest with people about her diagnosis. It's obvious that something isn't right but to come out and say that she has Cerebral Palsy and for everyone to know and it be real I just can't get the words out of my mouth. My dd goes to nursery two days a week. When she started we weren't aware that there was anything wrong with her. We have just got forms in for preschool due to start in September so we are going to have to declare that she has cp. Also she is going to be getting an ed pysch assessment for to see if she can get a statement for to get 1 to 1 support which I am sure that she will need. Your right things are shit sometimes.

Anyway I was at physio this morning and was asking my physio about the neurodisability apt and what she thought would happen. She thought that they would watch my dd walking with and without afos. She said that she thought my dd walks better without her afos on but that her feet roll badly inward. I didn't push further. Sometimes I don't like what I am hearing! Really nervous about neurodisability apt and what they are going to say. Anyone any experience of this. Can they operate and can this be fixed. I know the white matter loss is permanent but can the physical problems be fixed?

Hi, I haven't posted for a while but just thought it may help to add my thoughts. My ds will be 5 in a few months. He still can't walk, but in the last year or so we have come round to this. What I really want to post about is wheelchairs. I think as adults we see wheelchairs as a sign if dependence, but my little ds sees it as a sign of independence. He can't walk and has never known anything else, but he knows he is different. What he cares about is not how he looks or how he walks though. It is speed and independence ( and friends ). When he has his kaye walker he can run, and play football. As his mum I know it looks awful, but the kids don't care, and neither does he, the Kaye walker lets him run, and join in. The wheelchair more so, he is at the right height, can wheel himself off, and do things his friends do ( like press lift buttons and pelican crossings). He can also get away from me, but finally he can be quick.

I have found that since having the wheelchair, rather than the fear of it, I have come round to his point of view. I do wish he didn't have it, but given he does have cp, the wheelchair is an aid to allow him to join in and NOT be excluded, it 's just adults who don't get this. He loves it. And as an adult I want him to so he can go to the pub and get drunk, without falling over. I don't want him to hate it. I don't want him to need it but given he will need it I would rather he didn't get the attitude of adults but those of his 4 year old friends, who see it as fun, and speed.

I am not meaning to belittle what you feel, we feel it to. But for what it's worth even though ds can't walk he can manage stairs with rails, and to transfer and his new trick to get from his walker to a dining chair without help. But it's the help, and the care we don't want him to need, not the devices, aids and adaptations which allow him to be like the other 4/5 year olds as best he can.

I 'knew' (mothers gut feeling) from very very early on in dd's life that she had CP even though the doctors fobbed us off and there was a time when I couldn't even say 'cerebral palsy' or talk about dd without bursting into tears, as time has gone on it has gotten easier. Tell people when you feel ready and able and sod them let them think what they like!!

Albaba I too have learnt not to ask some questions, early on in our journey I would ask medical profs questions 'will she walk' etc etc and often didn't like the negative answer and wished I hadn't bothered, so I have trained myself not to ask, even hough the question is on the tip of my tongue. They don't know anyway and they only make me feel crap.

I think our kids will grow up to take no shit, no doubt there will be horrible kids but on the whole society is so much more accepting than it was 30 years ago and after all they are just normal kids whose little legs don't work as well as the next kid. They will succeed and be happy because we are behind them every step of the way.

babs dd had her MRI yesterday. Dd coped brilliantly, she took it in her stride, we went in at 1130 and were home by 6. We just have to wait for the results, but tbh I am in absolutely know rush to hear them.

Glad to hear dd coped well with the MRI. How old is she again? Sorry am on phone so cannot scroll up.

We collected ds splints today. They're not great. They have busses and planes on but are so bulky, we couldn't find any shoes at all to fit in the whole of the shopping centre. Anyone have any recommendations for shoes that fit AFOs? I keep hearing about piedro boots but I asked my physio about them recently and she was v dismissive. But at the moment we can't even use the splints, the sole is just slippery plastic and they make his feet far too wide to fit into any shoes, even ones 5 or 6 sizes too big. Plus there's a big bit of Velcro on the bottom, so he sticks to the rug

What size are the feet in the AFOs. Have they been measured by a shoe shop?

There usually are shoes out there, for littlest Ecco tend to work, for bigger children trainers. I have some DS has grown out of which went over his splints I could send over if you want to try them. We had some wonderful Italian shoes for a while, then some cheapies from Next, some from Sportsdirect. Now we have tomcat twisters for school which are great but very expensive. It's a pain though.

BABS. We got afos for my daughter, they have pink bunnies on them supposedly to make them look more girly. I don't really like people seeing them though as I feel it marks her out as being different so instead of dresses I would tend to put her in a pair of jeans with a wide leg so she can wear them under them.

We had exactly the same problem as you when we got my dd's afos. We literally trawled the shopping centre with these afos trying them in to shoes to see if they would fit. Our Orthotist recommended going for cheap shoes like supermarket ones as she said that all the support would come from the afos so it didn't matter about the shoes. I found it really disheartening though that instead of having her pick of nice pretty girly shoes she just had to settle for whatever shoes would fit her. We eventually got her shoes from Dunnes which were a canvas shoe with a Velcro strap across the front. She wore them constantly until the strap broke. We then got her shoes from Shoezone which again are a canvas shoe but have two Velcro straps across the front. They have been great and were only about £6.00. We went back to get her another pair and found that the shop had closed down! Her shoes are currently on their last legs so we are going to have to try and get her more which I am not looking forward to especially in the winter as it is all boots in the shops which I know her afos won't fit into.

On the subject of piedro boots my dd is supposed to have these as well. We were fitted for them over a month ago and still haven't got as much as an appointment letter through for a fitting so she is wearing her afos all day. They are now getting too small for her and rubbing on her ankles causing sores. We explained all this and helpfully the NHS give her an appointment for the very end of January. There doesn't seem to be a human side to them that she needs them that she is a child and she needs them now and that they are causing her discomfort. The things we have to go through!

thanks both. Stupidly I forgot to get the AFOs measured yesterday while we were actually in the shoe shops so I now have to find somewhere in my lunch break in central London that sells/measures children's shoes! Argh. I don't get why they cant make the AFOs themselves suitable to wear either indoors or outdoors. They're virtually no good to us as they are, but DS is gradually getting used to them - we've just been giving him chocolate buttons to distract and letting him stand in front of the TV watching Peppa Pig. Not what we'd normally do but needs must.

Albaba we looked in Primark for some cheap canvas shoes with the same idea as you, but they had ONE pair which fitted width ways but they were literally 10cms too long. It shouldn't be this hard, I am really cross about it. 'Cos life is so easy that we can just spend hours and hours getting shoes to fit these things so our child can actually wear them even though he hates them.

Everything feels very overwhelming at the moment, I feel like I'm close to not holding it all together. We are trying to move, remortgage our current place, new mortgage on the new one, we are building a house so need to get the plans done by Feb, I also need a new job for when we move, and then keeping up with all DS's physio and various appointments and now this AFO stress..... feel like tearing my hair out. Sorry for the long 'woe is me' post.

sorry the AFOs are painful for your DD Albaba, that's disgraceful she cant get an appointment until the end of Jan. Can she wear thicker socks with them in the meantime? Can the AFOs be modified in some way with padding? They might be able to be bent a bit if you heat them up with a hairdryer... i watched them fit DS's yesterday and they heated up the plastic to flare it more to make more room in the calves... any good?

Babs. I phoned the Orthotic Office and explained to them that we had an appointment due in November to get dd fitted for new piedro boots and could she be fitted for her new afos at the same time and explained the issues she was having with them. Apparently not even though it would have literally taken an extra 10 minutes to do we have to wait until the end of January to get it done. On the day though I explained again to the Orthotist the issues she was having with them. As you say she heated them with a hairdryer and put pads in at the side. It's ok as a temporary measure but not ideal.

I know how you feel about things being overwhelming too. Sometimes I am like can anything else possibly hit us? I am off work on sick leave at the moment. I had a difficult work situation, my dh is long term sick and we have a dd with cp. I just felt that things had got completely on top of me. I was trying to hold down a job, my dd has appointments literally every week along with all the usual demands of trying to keeping a house. Sometimes my dh isn't able to help so it feels like it is me that is trying to do everything. I went to my Doctors and got signed off work for a few weeks. I am due to go back shortly. I know how you feel though. Life shouldn't have to be this hard!

Grrrr the system infuriates me sometimes Albaba. We've been reasonably lucky with timings and being seen etc so far but even so, I still feel like we're not doing enough. It's a very frustrating feeling isn't it.

ps sorry to hear about your stressful work situation, along with everything else. #Life's a piece of shit...when you look at it...#

In case it helps:

Knee length welly socks are often quite padded, they make the afo's not fir as well and the orthotists hate them, but needs must. Otherwise as well as tights school socks are often useful as they are knee length and good, TK Max has a few foreign brands, asda do some great socks, so do POP in winter.

Phone as often as you can to see about cancellations. Most of DS appointments with orthotics have been cancellations, repeated charm with the clinic administrator ( who Ds always goes to chat to) makes the appointments appear when they allegedly don't exist.persistent can be key.

Talk to the physio to get the next fitting about 2 months before you think you'll need it. It's a bit of guess work, but I now know roughly when ds will grow out of his. Orthotics work on 6-8 months per pair. I think the guidelines are review after 6 months, and that's not a bad guide. But if your dd has growth spurts over summer, then a review in September is necessary.

Haberdashers sell Velcro which can make some slight adjustments. Molten glue guns fix most problems, Italian superglue is wonderful when straps break ( needs must on holiday)

Also in case orthotics don't tell you Splints should be " broken in " and built up an hour or so extra a day, red marks should fade after a short while without them sat 10-15 minutes, if not there is a problem. And take them off if your child is playing on the floor, sleeping , napping etc. there are natural times to have those breaks, and they shouldn't be too problematic.

whereonthestair thanks, v helpful. Where do you get the welly socks from? And from what age are they available?

I tried to find longer length socks in John Lewis, Primark and a few others but they only had standard length ones. Ended up going with just normal socks the next age range up so the heel is up his ankle but best of a bad situation. He's in 2/3yo socks usually.

We have got welly socks from next, m+s, Jo-jo maman and h+m over the years.

Asda sell welly socks. £4 for two pairs.

Hope everyone is almost ready for Christmas

We found some long socks (thanks for recommendations) but still struggling with shoes. We have slipper socks which work well at home. We took them back into the AFO clinic and they've agreed to adjust the heel block as they weren't made to the right spec last time

babs dd will be 3 after Christmas.

Talking about piedro boots albaba I Get dds from eBay. Our NHS physio says they are not necessary but our private one who we see weekly and I feel knows dd far more IMO, highly recommends them and we really notice the difference. Without them dd's ankles really roll in? You could try eBay whilst waiting for your new pair. I hope you are feeling better after being signed off from work.

Hi everyone,
I just wanted to wish you all a Merry Christmas and a Happy New Year.

I hope we can all help and support each other in 2015.

I apologise if i annoyed anyone earlier in this thread, i hope i didnt but if i did i didnt mean to.

A quick update on our situation -DD is 2 yrs 2 months, crawling very well and fast, no interest in pulling to stand as yet but can kneel and will initate steps if holding our hands.
We have had a referral for a pushchair and have been assessed for a Swifty. We have also had a referral for Speech and Language. NHS physio have also suggested an intense block of physio in the new year.

I am excited and nervous to see what 2015 brings.

redfox and all a belated happy Christmas . Hope you all had a good one.
(And I really can't see how you may have offended anyone either on any of your previous posts)

Your dd sounds like she has really progressed. And how wonderful, that she can crawl!! Am sure 2015 will see her speech come on too. My dd is delayed in her speech but understands everything. Over the last 2 months or so, since her last SALT input her speech seems to be taking off. Pronunciation is a bit of a problem, but words are gradually getting clearer and clearer and more and more.

I too am excited yet nervous about what 2015 will bring. DD starts nursery in January and We are hoping, praying and working towards maybe her walking this time next year !
2014 has certainly had its low moments, slow on the movement front, but when I think of where we were this time last year, dd has done amazingly well.

DD now has a Lycra vest. It improves her control in standing so much, and she is very happy to wear it, but she has returned to being a bit more wobbly in floor sitting when wearing it , Typical of this CP world, that it helps one area but makes another slightly more difficult, we will battle on.....
Happy New year all x

SUMMER, Can I just ask how you went about getting a lycra vest for your dd? Also is it just for use during the day or does she wear it at night?

We had an appointment recently with a Neurodisability Consultant who suggested that a lycra vest would be useful for my dd. She has problems with a weak core. Anything that would be of benefit to her I am more than willing to try.

Thanks Albaba.

The physio at her CDT review referred her for an assessment. We git it relativly quick too. The best way of describing dd is that she is 'wobbly' in her core and as a result her tone increases to compensate. The hope is that the Lycra vest will provide her with more support and reduce her tone. There is a noticeable improvement in standing. She wears it all day. Started off with a few hours.
Its certainly worth a try IMO.

Happy New Year everyone x It's been some time since I last posted - I'm on page 1 . Just posting as Whereonthestair's post really resounded with me. DD2 is 3.5 years and just got her first wheelchair on 17 Dec. I was in tears. But DD loves it and as Whereonthestair says, it's the difference between our adult perceptions of the chair versus the child's recognition of the support, independence and, yes, FUN of her chair. She's determined to self propel too! For background DD2 can now walk and now does so fairly well. But she can't go at a typical pace or for an extended time. So as she is now in ms school (nursery), we needed something to assist her in school trips out - so just occasional use. If anyone thinks that there is a chance that a wheelchair might benefit their little one in the future, please ask for your referral from your physio or whoever now before you grow out of their pushchair - we were 10 months on the waiting list for referral to wheelchair services, then 6 weeks to get the chair. Hello to all the newbies too xx