Cerebral Palsy
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Mild Diplegia - Outdoor advice needed

sabear35sabear35 Member Posts: 6
edited September 2014 in Cerebral Palsy
Hi, I am Mum to Lily, 2 yrs 8 months ( born 9 weeks premature) who has spastic diplegia CP affecting her lower limbs and hips, more on the right than left. She was diagnosed at 2 years 3 months when it was clear that her walking was affected. She is under the physio at the Norfolk and Norwich hospital and wears AFO's and piedros. She is gaining confidence in the AFO's which she has had for 3 months now but still requires a supporting hand when out and about as she tends to fall over due to balance and co-ordination problems and obviously gets tired easily. She is a very bright determined girl.

I would grateful for some advice on how people cope when out and about. Lily likes to walk but gets tired easily and is at the stage where she doesnt want her pushchair it then makes it very difficult and we often end up going home. How do other people cope and what aids if any do you use?

Also do people find that swimming is of benefit?

DLA mobility - lily will be 3 in September and we are thinking of applying for the mobility, we already get middle rate care. Does anyone with a child under 5 and h mild CP here receive the mobility Part?

Any advice gratefully received


Thanks

Sarah

Replies

  • rachaelneallrachaelneall Member Posts: 6
    My daughter has moderate diplegic cp and is 11 now. We were awarded the higher rate of mobility DLA. It's all in how you fill in the form. I had an easy comparison as she is a twin and her brother does not have cp. They gauge you on what you have to help your cp child with that you wouldn't usually have to with a non cp child. Hope this makes sense. We got a trolley so we could go on a family bike ride, she had a maclaren big buggy lent from wheelchair services and now has a wheelchair on loan. We also have a motability car
  • libismumlibismum Member Posts: 13
    Hi our little lady also has a mild diplegia, wears AFO's and a lycra suit she is 5 and an all important half !!
    we had and still do have some issues with outside, uneven ground and pure exhaustion. initially we were given a maclaren buggy by wheel chair services as we were having very similar issues as Libi not longer wanted to sit in a toddlers buggy, physio felt that her positioning was poor too as she had outgrown the buggy. she was happy to sit in a "big girls buggy" when she needed to -i think it was more comfortable and the seat was higher so she was able to see more!. At about four she started to make comments like " i am a big girl so i dont want to sit in the buggy" wheel chair services suggested that a wheel chair might be more appropriate and she chose a very pink, very tiny chair. the OT with wheel chair services added a head rest and reclining back plus harness ( all of which i felt were not necessary at the time), all of which I now know mean the chair is perfect for Libi. she is happy to use her chair, can reach things and move herself when she is in it which give her some independence, she now rides to school potters around on her feet all day and rides home when she is shattered, she uses it on family days out or long shopping trips, school visits etc and we are able to do so much more as a family than we would be able to do without it.
    Her physio is very keen that she learns to use her chair when she needs it to help her get the most from each day and manage her fatigue levels and she is becoming more aware of her own needs as she grows.
    Libi also has an adapted trike from Theraplay, she enjoys riding along the beach, around the village and to school when the sun shines and she finds it less tiring than walking ( much more fun too).
    Hope you are able to find a solution that is just right for you and your little one x
  • BIMEBIME Member Posts: 15
    If your therapist thinks its suitable you could apply to our Wizzybug loan scheme - the Wizzybug is designed for indoor and outdoor use and for children from 18 months to about 5 yrs. Depending on our funding we may be able to help.
    www.wizzybug.org.uk
  • edoveyedovey Member Posts: 10 Listener
    Hi,
    My son is 3yrs old with mild diplegia and he has been awarded DLA. He was diagnosed inNovember last year. He is affected primarily in his legs, particularly on his left side. He was obviously slow to reach milestones like sitting/ crawling etc. He walked at 22 months and never crawled properly. He can now walk independently; he wears AFO's and has gaiters which he has to wear for 1 hour aday.
    I believe hw got the DLA as he has difficulty with distances, stumbling, uneven ground, balance and coordination. I don't know if you have seen someone from SCOPE, but they can help you to fill in the form appropriately. It is hard filling in the form as a parent; you tend to focus on your childs achievements as a way as keeping positive about the future, and it is distressing explaining in detail all the things your child cannot do. But if you are awarded DLA then you can use that fund, to help your child; we do lots of swimming, yogabugs, tumbletots etc. He can't do the activities perfectly like the other kids, but I'm hoping in time it will help with his strength and flexibility.
    xx
  • sabear35sabear35 Member Posts: 6
    Many thanks for all your replies, with some helpful advice.

    Its reassuring to know we are not alone, as sometimes its easy to think that way.

    xx
  • BaumieBaumie Member Posts: 5
    Hi Sarah,
    My daughter is 5 with a very similar diagnosis. We use an oversized buggy which you can get from mobility services - your physio will be able to put you in touch. This is great but takes up most of the car and has no suspension. We opted for a childs wheelchair as it was clear that distances were a problem.

    For example we love theme parks and my daughter will spend most of the time in the buggy as it is busy and a lot of walking. Distance seems to be a problem as they get older as they have to work harder than we do.

    They also get heavy!

    Swimming is excellent as it puts less pressure on the joints. Any form of physical activity will give you a tired child though. There are also special needs gymnastics groups which are great fun.

    We receive mobility and have since my daughter was 3. This is because they get heavy and they are unpredictable. When you fill in the form you must give them the worse case scenario as this can be what you are faced with. My daughter some days is too tired to walk round Sainsburys. We can park near the entrance and then I put her in the main body of the trolley while we go round. Then deposit her back in the car at the end.

    Hope this helps.
    Thanks
    Emily
  • sabear35sabear35 Member Posts: 6
    Hi Emily,

    Many thanks for your reply, its easy sometimes to think that you and your child are the only ones with problems. It was reassuring to hear that your daughter has similar problems to Lily's. Thanks for the advice on the buggy, its something that we will look at.

    Yes they do get heavy and I find lifting her in and out of the bath a problem now but thats something her OT may help us with. We are getting a frame for use around the family toilet as she is not yet confident with toilet training but she is slowly becoming aware although mainly of number 2's so I am a little concerned whether she knows she is doing a wee but we will cross that bridge as and when....

    I will look around for a local swimming class as I am sure it would benefit her.

    I have applied for the mobility, Lily is 5 in September, and had a reply that it may take up to 11 weeks for a decision. I was a little worried when the letter said that I had asked for them to reconsider her claim and as I have only completed the mobility part I am hoping that they dont take away the care element! I put down her difficulties with walking in general rather than a best or worst day so fingers crossed they consider all the facts. it would help greatly being able to have a blue badge.


    Thanks again for your help and information.


    Sarah
  • BongyornoBongyorno Member Posts: 9
    dear sarah,

    you wrote, your daughter has balance and co-ordination problems. it can help, if you do with her a lot of balance and coordination tasks.(dancing, and during the dancing she jus put her weight from one leg, to the other, walking on places, where the ground is not flat, playing footbal, and ask her to kick the ball first with her right leg, after that, with her other)And very important, to admonish her, to put her heel down. she has to practice it,to be better in it.have you ever heard about conductive educatiuon? maybe it can help.
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