Anyone having a child with spastic diplegia?

[Jokat]

Hi there,

My 16 month old daughter (corrected age 12.5 months) has just been diagnosed with mild spastic diplegia. We started physiotherapy just over three weeks ago and are on the waiting list for occupational therapy. My daughter started commando crawling five months ago and proper crawling just over a month ago. She can pull herself up onto her feet sometimes and is getting much better at sitting. Is there anyone out there in a similar position or has anyone been in the same boat and can tell me how their child progressed? I know every child is different and noone can tell what the future will hold for any of them, but it would just be nice to hear from other families who are dealing with this.

hi jokat there are quite a few whose dc have cerebral palsy. my ds (18mo) has ???spactic quadraplegic CP but is reletivly mild, he is just about sitting with propped arms, if he doesn't move
physio plays a big part in his life, everything we do is tailored around it.
your dd seems to be doing very well, and is not that far behind, with her milestones.

Hi jokat
My DS2 has spastic diplega (mild) he also ahs Autism & other learning difficulties & to be honest his CP & physical disabilitites is the least problematic of his difficulties.
As you say every child is different & CP is such a huge spectrum of ability & disability

DS2 was born at 28 wks, rolled over at about a yr old, sat albeit wobbly shortly after, didn't really crawl but just rolled everywhere & then started walking at about 2. Which was far earlier than any of us expected.
He can walk, run, jump & climb. He is wobbly, falls & stumbles more easily & tires very very quickly as the effort he puts in to walking is much greater - but honestly he has amazed us all.
The thing I didn't really understand initially is that the development with CP can be very disordered rather than just delayed IYKWIM.
ds2 wears splints on both legs & uses a w/chair for distance & tbh because of his autism I think he also uses it for security.

Your dd sound like she is doing brilliantly, I would recommend hydrotherapy if you can get it or just swimming as much as possible if not.

Should of said he is 7 now.

dd2 was originally dx with spastic quad. she's 6 now (with an athetoid dx).
her tone improved so much with physio/ over time that a spastic dx was no longer appropriate by 3 or 4 (re-dx at 4).

she walked late, obv, and used a standing frame and walking frame for a long period, but these days she mostly manages independently (she is a p/t wheelchair user for distance/ tired and wobbly days).
she also used splints/ piedro boots with neuro insoles. at about 3, the physio decided to trial a period without a walking frame to see if she could be prompted to walk independently at that stage, but it was too early - she could lunge across a room onto the sofa, but not stand still and balance/ change direction etc. so after six months we got the frame back and she used it as required until 5. (for year r she managed independently in the school building, but used the frame for playtime to allow her some freedom)

this weekend i bought her a pair of new walking boots/ trail shoes (purple keen ones) and she literally ran around the zoo well, her version of a run lol, but she had a blast. she's also learning to ski. this from a child we were told probably wouldn't walk at all... (oh and wouldn't talk... i can't shut her up lol)

because her whole body is affected she has some other issues, but these probably aren't relevant to you. she's always been in mainstream school, although had day release to a special school for pre-school, for spec therapies. physio and ot visit school to give updates and idea to teachers.

all good.

My friend H is 18 with spastic diplegia. She's a full time wheelchair user outside of her house, and can walk very short distances eg; transferring from chair to cinema seats, or walking up her driveway. She's had a lot of surgery, but as has been said, every child is different.

I will say this though, she is one of the most awesome people I know, she's willing to try anything once and wants to train as an A&E doctor And it's her attitude and positivity I focus on, not her disability, although with my sight problems it is something we do talk about with each other.

I have a dd with a very mild form of athetoid CP (no dx yet) so has fluctuating muscle tone which affects all 4 limbs. She has had a similar pattern of development to your dd by the sounds of it. She also crawled at around 15 months and could pull herself up and cruise. She walked at 20 months and most noticeably has low muscle tone in her trunk so can be wobbly and runs very strangely

Sounds like your dd is doing really well - I'm sure the physio and OT will be helpful

JOkat - I sympathise with you, as not knowing where the hell this is going to lead makes things harder I think.

My dd was born prem at 26 weeks. Never commado crawled, rolled over at 1.10, crawled at 2.6, and started walking with a frame at 3. She is now 6yo and is much stronger and quicker and more stable in her frame and is now learning to walk with tripods. Can't stand or walk at all by herself. Uses wheelchair for long distances.

She has had Botox twice and next up is surgery on her ankles. Physio, hydro and osteopath are just normal everyday life now and we keep on trying whatever we can.

LOLLYPOP. Tell your friend I used to work as a nurse in a&e and we had a female doctor who used a wheelchair - she was a fab. dr too, so it can be done.

Hi, my dd has spastic diplegia. She sat up at around 11 months, rolled over at about 15 months. Crawled at 20 months and took her first wobbly steps this time last year as she turned 3. She is 4 on Friday and is a real little star. She walks indepedentely at indoors, uses a kaye walker outdoors and a wheelchair for distances of more than 100m or so. She goes to dance classes at the weekend and is going to be in a show in May. For us it was going to the Rainbow Centre in Fareham - a conductive education centre - that really made the difference. Different things work for different families. I know how much you want someone to be able to tell you all the whens and whats. I kept on asking and eventually was told that dd would walk but probably not before the age of 4 or 5 so she has already surpassed their expectations and we take any bit of progress as another little miracle.

I don't know how the others here feel but I think we were quite well prepared by the doctors for the phyiscal side of things but still struggle a lot with the emotional-social problems that seems common in children with cerebral palsy. You may find things are different for your dd of course

chuffed that there's another dancer dd2 is in a show in may too!

apols for teeny hijack op.

beammeup, thanks for that, I've personally never met nor heard of any medical professional with an obvious disability, so that's great to know it's possible

lolly. My daughter sees a dr with cerebral palsy for her son who has CP. He says he went into paediatrics because of his CP. He's lovely!!

Hi ladies, Thank you very much for sharing your situations. It is inspiring to read how you seem to take your lovely children's conditions in a stride and have kept your humour as well
madwomanintheattic (love your name btw it's great to hear your daughter is learning to ski! We are passionate skiers and always assumed our dd would be on her first skies as soon as she is three or four! It's lovely to know it could still happen, even if it takes a bit longer before she gets there...
MeltedFlumps you're right, the uncertainty of her progress in the future is probably the scariest thing of all. She doesn't look too bad to us now and in fact her symptoms are so mild that to other people there doesn't seem to be anything wrong with her, she just seems a bit behind which is to be expected for a premie anyway. But the thought of her walking with a frame or at least splints or similar devices is still rather daunting for us. But at the same time all I want for her is that she'll reach her full potential, whatever that may be, and with whatever help she needs.
Hangingbellyofbabylon, you've made a good point there, until you said it it hadn't even occured to me that this challenge might have implications on my baby's social life once she goes to school and grows up. I just hope she'll always be surrounded by adults and children alike who will support her and manage to see past her frame or funny gait or whatever else may look different about her.
What type of dance do you think is the most beneficial for children like ours? I suppose Ballet would encourage a straight and open posture, with the shoulders having to be pulled back and all that, but have you encountered anything else that helps them more with their muscle tone?

My Ds1 is 12 and has modarate Spastic diplegia, he wears splints, has a wheelchair for distances, had 5 lots of botox and in 2008 he had multi level surgery to release the hamstrings, tenons and flexions in the hip. He is in mainstream secondary and doing really well

My Dd1 has mild spastic diplegia, ADHD and learning problems. she wears splints but like someone else said, her physial disabilities are not the big problem, her learning problems are the big one.

Hi Jokat - forgot to say that at this stage it is perfectly ok to be worried/almost horrified at the thought of splints, walking frames, wheelchairs etc. This wasn't what you planned for your child and you certainly don't have to be happy about it. I think (I hope) that most people here would agree that everytime you get a new bit of kit or equipment it can be like a slap in the face for a bit - even dd's special bath seat looked alien at first but now it's all just part of our world. So if you do get that sick to your stomach feeling at the thought of splints etc, be kind to yourself. (Have I just embarrassed myself totally? have never admitted before how hard it is to deal with this side of it all )

Re: dancing, my dd does ballet which is really good with stretches etc but also does disco dancing which is fun. It's easy to see everything as an opportunity for some extra therapy but being free and having fun is crucial too. I try to sit with dd when she's doing the ballet stretches then leave her to it and watch her wig out to Lady Gaga etc! She wears ballet shoes and no splints and physio have said they are happy for her to have time without splints for dancing.

Madwoman your dd sounds very much like mine! dd will start reception in September and should be fine around school independently but will use her walker for playtimes and stuff. The last dance show we had mermaid costumes to contend with! we decorated dd's walker with mermaid fabric bits and it went on stage with her. This year she is centre stage doing 'Earth song' and also some disney princess fairy type dance. Gotta love them

awwww.

ballet definitely. and first lol, for paid lessons - they can dance to whatever they like, however they like at home!

dd2 is begging me to start jazz classes in september. she asked her ballet teacher tonight who is going to give it some thought, but thinks it will be ok.

she dances in ballet shoes without additional support too - physio and orthotist think it is great for strengthening etc.

would also recommend swimming lessons (i know - the op has got ages yet lol, but at least it's sowing the seeds in there for the future). we had 1-1 support for her in the pool for the first year, but she's now in a small group and manages without the 1-1. she still isn't quite swimming independently, but tbh dd1 and ds1 were about 7 before they finally got it, and she's a determined little minx.

re equipment - yes, it's something of a shock, but you get used to it frighteningly quickly - and soon get in the hang of fighting for more, when you see what a help it can be... (and then you run of space to store it lol). the biggest shock is a walking frame i think - people are pretty much used to wheelchairs etc, but somehow a walking frame is even more of a remove from the ordinary and quite a lot of parents find going out with a frame very difficult. but dd2 loved hers - it let her run and (eek) jump and do spinning round tricks which she could never do unassisted (although she'll have a good go now .

anyway, lots of us here.

hbob - i look forward to the show thread in may

I'll start taking her to smimming sessions when the next slot starts I think, and in a few years time I'd like her to start horseback riding, which our physio recommended. I'v ealso found a woman who does yoga with children of all ages and with a range of special needs, incl. CP. Still waiting for a reply to my email though...
Our pediatrician predicts she won't walk before 24 months of age, wich is still a long way off. I just wish I knew what to expect so I can adjust to it and make my peace with it. I suppose the upside is there is still a chance she might only need minimal support with her walking. O well, I'll just have to be patient

Have any of you taken on a cleaner to help with the household so you have more time on your hands for the therapy? I wonder if I owe it to my daughter to do more than I currently am to provide her with as much physio as humanly possible. How do you deal with this?

Hi my son is 2 years 9 months and has cerebal palsy, spastic diplegia, and he is getting there although slowly. Not yet walking, but loves to climb. He his under the physio (providing a chair, and boots) and speech therapist. I have found a conductive education centre (google to see if there is one near you) which we have been attending since February, and his progress and confidence in himself has been remarkable. We now push him a little further through our own learning at these sessions. He attends mainstream nursery full time, and this has also made a big difference to his development. Up to 16 months he was not sitting independently, but he is motivated a lot by people around him. Obviously, it is a worry, but he is constantly moving forward, and his achievements are big ones as he has to learn balance etc, where most of us just know it. We are waiting for a walker to give him an equal chance to compete in the nursery garden, so even if he cannot do what his peer group is physically, he can be at the same height, and be in the environment digging etc, without the fear of being knocked over. Before he went to nursery full time we also got some sessions with portage; both sensory and the teaching service, which all helped stimulate his development. Your child is doing really well and their achievements are big ones.