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14 month old with Spastic Diplegia CP. HELP

mummygoodgemummygoodge Posts: 3Member
edited June 2014 in Cerebral Palsy
Hi i'm looking for help and advice from anyone who has or knows a yound child with SDCP.
My son can not sit up, crewl, stand or walk yet. We were told about a month ago he has SDCP and i would like to know what the future may hold for him. I want to know as much as pos about equiment and things like leg and ankle supports. Thank you.

Replies

  • JDWilsonJDWilson Posts: 90Member
    This must be such a hard time for you as parents. I have a almost 12 yr old with SDCP she did sit at 6 month + and tried walking round furniture from 9 months but didn't progress further at 19 months we got her diagnosis. Easy for me to say been there done that Take each day as it comes. Have you got a physio? ask to see one they should sort shoes and splints.also some exercises. Allow your child to struggle to do things Sounds cruel but he will thank you in the future. If he wants something bad enough he'l get it in his own way. I'm not saying make his life harder than it is but don't jump every time he moves Bet you haven't so far so don't change because you ve got a diagnosis.You carn't exchange personel details on here but on FB there is a support group that you will get answers quickly to the problems you will face Try helpkidswithcerebralpalsy. It is a very active group and someone will usually have a good idea or answers not always professional but personel experiences It would be up to you to take advice or not YOU know your child best But we ALL need support at times. Good luck with your little one. You will see soon (if not already) how DETERMINED our children can be.Take care and try not to let the bad days get you down Scope is always there. Your child will AMAZE you so NEVER give up HOPE.
  • monnatmonnat Posts: 2Member
    hi
    I have a daughter with cerebral palsy is now three years. Since the space of two years we go to Polish to Warsaw every two months to two weeks of intensive rehabilitation center Olinek. There daughter is 2.5 hours daily rehabilitation of the well-trained physiotherapists. I would add that they speak good English. The trip cost us
  • twinmomtwinmom Posts: 14Member
    Hi, Believe me, I know exactly what you're going through. My now 20 month old son was diagnosed with SDCP at 11 months. I can honestly say that's the day my life changed!! I think it's the uncertainty what the future holds that I find the hardest, as there is no way of knowing. My little man can't sit unsupported either,or crawl, but he has made great progress. He's an identical twin, and it frustrates him seeing his brother crawling around and he can't move. We're in Ireland so I presume its different, bur Eoin gets physio twice a week for a block of 5 or 6 weeks, and then he'd have a break for a month maybe, and then once a week. It varies. We do the exercises every day with him. While the progress is very slow, it is steady, and he's gradually getting stronger. Re equipment, Eoin has a standing frame, a Sunbeam chair and a squiggles chair. He doesn't have any leg or ankle support yet.
    It is hard to come to terms with, and like I said its the uncertainty that I find very difficult. But I'm starting to deal with what we need to now, as in concentrate on getting his trunk stronger so hopefully he'll sit one day, and then we'll worry about the next stage...He is just so cute and gets cuter every day!!
    Just wanted to let you know there are others in the same boat. Best of luck with everything
  • LeilasmumLeilasmum Posts: 8Member
    Hi there, my daughter was born 2.5 months early. She started to commando crawl at ca. 11 months but still couldn't sit, stand or properly crawl when she got her diagnosis of SDCP at 14.5 months (one year corrected age). As soon as she started receiving physio a few weeks later she learned to sit and crawl, could crawl properly only about 2weeks later and sit nicely maybe a month and a half or two months later. Last September, just under 2 months before her 2nd birthday, she took her first steps (quite a bit sooner than the professionals had predicted). In October she got her first pair of splints, which go from her toes round her heel and ankles and about a third of the way up her calve. It took her a little while getting used to walking in them, which gave us a hard time with her grandparents who kept pointing out how she walked better with them off than with them on. We kept putting them on anyway (of course) and soon she was more stable and confident and therefore quicker with them on. We soon realized that for a child with her condition, learning to walk isn't just a question of them taking the first steps later than typical children (if they can walk at all) and then taking off, the whole process of getting more and more fluent and confident also takes much longer, so be prepared for that. Leila has only recently had enough courage to walk at friends' houses, outside and in other public places like supermarket, library etc without holding hands, even though she'd been walking around our own house quite happily for a few months already. She is doing great and we're sooo proud of every achievement she makes :-) She also has occupational therapy for some mild fine motor skills issues and she is a bit tactile defensive, meaning she has trouble touching certain textures with her hands and feet. E.g., for a while she couldn't bear touch play-do, shaving foam or stick her hand into dry rice etc, and she still doesn't like walking barefoot on cold floors, grass or sand. But her hands have got much much better already and we're working on her feet. Last summer she was eventually very happy crawling around on a sandy beach with nothing but her nappy on, it just took a while to get there :-) Anyway, I hope this gives you a bit of a picture of how things could potentially go. Try not to worry too much about the future, noone knows exactly what's going to happen and you could be wasting your energy on thinking up sad or challenging scenarios that will never actually occur. Just make sure you get physiotherapy sorted a.s.a.p. and also work with him as much as you can in between sessions, and enjoy each step he goes forward in his development! If you have any further questions, feel free to ask!
  • mummygoodgemummygoodge Posts: 3Member
    Thank you for all of the replys-
    Just a quick update-
    James is now just about able to sit up on his own and now drags himself around the wood floor- this last week he has started getting on on his knees. He now has his splints to help stop his toes curling over and we have a new squiggles chair for him which he loves. Had a wheel chair meeting last week and have to wait about 8 weeks to get his wheelchair/buggy which will help with his posture.
    He has a very weak trunk and wobbles alot in the middle so needs alot of extra support. His legs get very stiff and continue to move together instead of seperately. But he is still always happy. His hand and arm movements are much better with him now able to hold his bottle to feed himself drinks and his able to finger feed himself things like toast and sandwiches. But he gets very tired so i do have to take over feeding him some times. we are having phyiso twice a month and do lots of excises at home. He does alot of floor play which makes it clear his using his brain well.

    He is still not talking not even mummy or daddy. Anyone elses child taken longer to start to talk with CP? XXX
  • lorm1306lorm1306 Posts: 1Member
    Hi

    I have a little boy who is 3 and 1/2 and was diagnosed with CP at 11 months. He didn't start to commando crawl until he was 1 and 1/2 but is now cruising around furniture, crawling up stairs, climbing on couches and walking with toys. He is weak at the trunk and is unable to stand alone although he can stand against a wall. Not long after the diagnosis I got in touch with a charity called Brainwave who assess children over 2 days and create an individual program for each child as well as supplying some of the equipment you need. We have re-visits every 6-8 months and I feel he has made great progress since we first met with them. There is a cost each time starting with around
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