dd may have cerebral palsy and I am struggling [sad]

[ladylush]

Not sure if I am posting this in the right section. dd was born 10 weeks early. She passed all her screening tests and did well in scbu. Her locomotor skills were delayed but we expected that because of her prematurity. At 14 months she was seen by a pead (I requested referral) because she wasn't supporting well when sitting. The paed said she was fine - slightly delayed but not when taking into account the prematurity. She was seen again at 18 months (couple of weeks ago)as standing on tip toes and not walking. Paed said her achilles tendon was tight and referred her to physio. Otherwise no concerns. We didn't want to wait so took her to a private physio. Physio immediately seemed concerned when she examined dd and eventually (after much probing from me) admitted that she thinks dd has diplegia (legs). Unfortunately this news came at the end of the session and there was only time to ask what end of the spectrum she thinks dd is and what her prognosis is in terms of walking etc. Today I can't seem to stop crying. It is just so hard to accept - particularly as dd seemed to cope so well with her early arrival and all that it entailed. I know we don't have a diagnosis yet but I'd really like to hear from anyone whose dc has CP (particularly diplegia of the legs) who may have some advice about what we do now and what we can expect. TIA

So much excellent advice here, so much for you to take in! Be kind to yourself, it will be ok it really, really will.

Your dd is following an almost identical path to my ds. He was delivered at term after a difficult pregnancy, sat unsupported at 11m, commando crawled dragging left leg at 14.5m, stood on tip toes at 17m, cruised on tiptoes at 21m.

He was initially assessed as being developmentally delayed by community paed and paed physio at 17m then put under review (at local child development centre) I knew he had cp - am a nurse and trained in child development, also have a friend whose ds has sdcp - so managed to get assessment with head physio, who is friends ds' physio, who confirmed my belief. Next paed appt a month later dx was made, he was 26m. MRI 4m later confirmed dx (tho MRI is not definitive).

My ds is now 3.6, he walked with a Kaye walker from 2, has had DAFO's and is currently in an AFO splint on the left side (is more affected on the left) has had gaitors and has a knee cosy to splint legs at night. He walked independently at 3.2yrs. Am currently posting from my phone which is taking aggggeeess so will be back later but to second madwoman I would maybe wait a couple of months until you have more info/ appts scheduled before applying for DLA the more info you have the better your case. Also check out and sign up on the cerebra site, loads of info, and request their guide to claiming DLA, I found it invaluable.

Oh and we went on to have another ds, he is now 13m and it's all fine, already had two older ds' and we are considering no5.......

Thanks for the advice re DLA - makes sense to hang on a bit longer. My dd will be seen by the Neuro Disability Team soon so that might yield mire info. PT thinks dd is v motivated too move and that the CP is v mild BUT dd's feistiness means she fights the therapy. I hope it will get easier.

Cherry - thanks for your post. Were the gaiters (sp?) helpful? The new PT we saw today said they can be helpful when worn at night. I feel really impatient for dd to get splints. I know standing straight will help loads with stretching.

I feel quite overwhelmed with the responsibility of the stretches we have to do . Mostly fearful that we are not doing it right or for long enough. The new PT didn't think twice weekly PT was necessary - said we could incorporate it into dds day. She advised 3 x 10 min sessions. Am confused - don't know which advise to take.

Absolutely agree with your physio - the continued stretching and exercises you do with your dd will be far more effective than 2 physio appts a week. There are loads of ways of incorporating it into your daily routine.

Am posting from phone again as just got in bed following nightshift, will check in later have loads more I can tell you about my ds, therapies etc etc will pm you later.

Yikes my spelling/grammar has gone to pot I blame the iphone!
verycherry hope you managed to get sleep. I don't miss night shifts at all. The unsocial hours payment is missed but I could never sleep well in the day so I used to get run down.

Right, am waiting for my book to arrive I feel like everything is on hold at the moment. We are doing exercises with dd but it doesn't feel like it's enough. Trying to make it fun for her and not seem too harrowing. She was very unsettled both the nights she'd had physio earlier. She wasn't in pain, but I think she just found it very unsettling. We put her on one of those little ikea stools today and put toys in front to get her to stretch toward them. That seemed to work quite well and I noticed that dd sat quite straight on the stool - back not rounded like it is when she tries to do long sitting. One of the biggest obstacles we have is that she wants to be mobile all the time so gets impatient if we are trying to do exercises with her. And there's one exercise we're supposed to do to lengthen her extensor muscles (with her lying prone with legs straight and arms stretched out in front)but short of restraining her it's impossible cos she just crawls off!
I looked into hippotherapy today. Not sure if dd is too young but would love her to do it when she is old enough. There is a place fairly near us. Was thinking this could replace a PT session and be fun for dd.
Having problems getting a local PT for home visits. This will be more of a problem if NHS don't offer us weekly PT.
There seems to be so much in the way of therapy/treatments that I don't quite know which way to turn. We have to think carefully about what we invest money in because we are over the threshold for help from charities and I'm not counting my chickens as far as DLA is concerned. Conductive Education looks interesting but it costs in excess of 3k a year. That's quite a lot considering that most of the work is done at home by parents. Or am I missing something?

I think too young for hippotherapy. age 3-5 depending where you ask. But there is a long waiting list in some areas (18 mo) in ours so may be worth looking at riding for the disabled and getting name down. For diplegia it is perfect.

Swimming is also brilliant - hydro pools are lovely and warm and ideal for spasticity.

We are going to Brainwave in March (more waiting lists for not too bad!) look on their website. It is very user friendly and child orientated. We have heard good things from everyone who has been there. £500 for intensive 2 day course, then £250 4-6 monthly. Constant contact by phone if you need help, not too expensive to us.
3 x 10 min stretching daily sounds about right for diplegia.

Don't worry the fog will lift and when DD walks be ready with the hankies!

I have just had a very long session with my nhs physio, after a very long call with Scope response. Both were saying that you can do too much therapy, and that some of the research on therapy showed some of it can be counterproductive. Not sure if that's right and my ds is still a titch of course at not quite 9 months corrected. She also said if you do do soemthing else go to Bobarth centre. Ok so going to google now to see whether there is one near me

Hi - not sure if you saw my link to small steps school for parents. It's a conductive ed session once a week that is free, as it's run by a charity. It's based in Putney.
We did hippo therapy when DS was 2. He now does riding every Saturday during the term time at the Diamond Centre in Carshalton.

Sorry don't have time to do links now but if you google these they will come up. Both have waiting lists though so get her name down Asap. You can always decline when it comes around if its not right.

Also - you can overtherapise - we did that. Had to back off completely and do absolutely nothing for a while. It came from the best of intentions and was never 'forced' but was too much for my DS's temperament and physical stamina at the time. He was about 3.5 years old at that point.
I learnt a good lesson there and am now very careful about what we do and make sure he has as much fun activities as possible and fit therapy into those if possible rather that therapy first and the run around the edges.

Hairy - Putney is quite far but free is a good incentive to travel! I emailed the Diamond Ctr yesterday - quite near me. Thanks for suggestions

Ok 3 x 10 mins is doable I think. We don't have hydrotherapy nearby but my gym family pool is v warm so I will take dd there more often . Not sure if we need to investigate SN swim lessons? We went to the pool today. I felt so sad when I saw little ones jumping in but maybe dd will be able to jump one day. Getting down in the dumps again - permission to kick me up the arse.

I totally empathise with you re seeing little ones jumping in, it is sooo hard. At one point the gap between my ds and his peers just seemed to widen and widen and I did feel very sad but then all of a sudden he started doing much more and the gap is now much smaller and not always immediately obvious.

No arse kicking here, tis normal to feel sad but it WILL get better I promise you that.

Thanks verycherry - if I really knew it will be ok I think i'd relax a bit.....but it is still nice to hear someone else say it x

Lady - have pm'd you.

Bugger! Drafted a long reply on my phone then it woudn't send. Will reply when I can get on the pc x

How very very annoying! I takes so blooming long to post from phone doesn't it? Then to lose it gahhhh! Hope I was of some use anyway x

Very useful x

Watching other kids is very depressing but it gets easier, you just get a shock now and again over the differences. But you see constant improvements in your LOs, teeny tiny ones but you build and build on them. We were going though our book 'teaching motor skills etc' and thinking, he does that now, he can do that, he pretty much does that etc etc! We are now into the middle section of the book with building his skills - today sitting on his little bench and leaning forward to pick up his ball.

We hadn't even realised the progress he'd made! Still a long way to go but we'll never give up!

Sneeze - got that book yesterday. Thumbed through it and am looking forward to reading it properly. I do hope dd can manage to long sit properly before she is 2 - so she has a better chance of walking. She can long sit if we ask her to "sit properly" - switches over from "w" sitting by bringing one leg out herself then pulling the other out with her arm but she can't get her legs flat on the floor (guess her hamstrings are too tight)and does not want to sit like this for long - I guess because she isn't quite stable. She can however sit quite nicely on a little Ikea footstool - with a straight back.

dd will see the NHS physio in about 4 weeks and will see orthotics in about 6 weeks hopefully. Shame I had to fight for it, but looks like this is common place for parents who have children with SN.

verycherry - I finally managed to pm you. Had to cut and paste from word cos it just wasn't working otherwise. Let me know if you don't receive it.

Lady - I think once you get 'in the system' there is lots of help and equipment there. As you know its all so new, but there is physio, hydro,OT,portage,sensory rooms, salt, dieticians, botox - tons of different equipment, charities, etc. It just takes time to work out who is who and who does what! Some weeks DD had an appointment every day!

Lady - all received and replied to thanks!

WRT the long sitting, it sounds like your dd is where my ds is now with it, he cannot put his legs straight or sit in that position without being very unstable and he HATES sitting like it.

I think the not sitting before 2 applies to not sitting unsupported in any shape or form - as you know my ds is walking, he can bend down and pick things up from the floor and he kind of dances too!

Sneeze - looks like dd won't be getting PT weekly. Fortnightly at best - coupled with a home programme. Not sure whether this is standard.
Verycherry - I replied

Hi. DGS gets fortnightly physio at DDs choice, cos both being nurses we can pretty much work under guidance. When you add weekly hydro, weekly portage, fortnightly OT (sensory room) plus SALT fortnightly. And doctors and dieticians appts as and when, DDs house has a revolving door. She also goes to singing afternoons and coffee mornings. We still manage a good 2 hours physio most days, probably more as we're always doing something to improve his movements, even having his grub he's swinging igglepiggle around the feeding tray!

Lady - is there a standard when it comes to NHS services??? Standard for us is blocks of weekly physio, usually 6 at a time then a break then another block but if anything changes with ds physio requirements change to suit.

Ok thanks. Quick one from me cos I am I'll with a horrible cold.
Dds private PT was really pleased with dds progress over the past week. So guess we must be doing something right

I hate messaging on my iPhone! I can spell - honest!