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2 year old with CP not walking

harrybo4harrybo4 Posts: 2Member Listener
edited June 2014 in Cerebral Palsy
Hi There

My son Harry is 2 yrs and 3 months and was born at 31 weeks gestation. He was diagnosed with Diplegic CP 6 months ago and as many of you mention it was a long fight to get the diagnosis although i flt the signs were there for months before.
Harry is as bright as a button, his speech is fantastic but is unable to walk. I know it takes time and nobody can give you answers but I feel like we have had the diahnosis and then left to fend for ourselves! Harry crawls reciprocally to get around and can pull himself to stand, he is unable to stand unaided or walk, yet with his K walker is managing to get around with his splints as well. Harry went from having physio once a week to now once a month if we are lucky which i find very frustrating, although we do his exercises daily (you never know if you are doing them correctly!!). Was anyone else's child not walking at this age and if so did they walk later on? I have also been reading about SDR which sounds great and looking at info Harry may be a perfect candidate.
I would love to hear back from anyone who shares in these experiences or knows more about SDR. All of your stories are inspirational and our children are the real inspiration.
Thanks for litening :-)
Mel

Replies

  • sabear35sabear35 Posts: 6Member
    Hi Mel

    My daughter was also born at 31 weeks and has just been diagnosed with Diplegia at 2 yrs 3 months and like Harry cannot yet walk. She seems to be affected just on the right lower side and is too as bright as a button. She finds balancing the most difficult thing. We had constantly been told that her brain had to catch up because of her prematurely but we knew it was more than that but were shocked to discover it was CP.

    She has now been referred to get a splint and will have physio so hopefully she will walk soon, she so wants to !!

    My one question to others is did it affect their little ones atending pre school at 3?

    Its good to hear that we are not alone, as sometimes it feels like it.

    Any other advice would be gratefully accepted.

    Thanks

    Sarah
  • renacahillrenacahill Posts: 145Member
    My grandson with CP who is 2 is expected to attend nursery at 3. We have spoken to his physios and there is a local nursery which has physios who attend and will do physio. They will also ensure the equipment Elli needs such as standing frame and special chair is also available. The physio is incorporated into the daily activity. It sounds excellent, my only fear is that funding may be withdrawn!
  • JDWilsonJDWilson Posts: 90Member
    Hi My daughter is now 11 She has SD CP Like your son She used a K walker She did walk independantly though unsteadily at around 3. Didn't get much physio etc had to do it ourselves I have ben hearing a lot about SDR and have ben in touch with parent's whose children have had it done. ALL possitive experiences with good outcomes. Have you seen Take a Break mag recently there has been a freak run in these stories and I have contacted the parent's through Facebook. SDR so far is not the norm in England and you will proberbly get little info through your professionals. There is a lady called Sarah fox who has got TWINS with CP she is going to St Louis in Feb for her daughters SDR You might find her through FB Happy feet appeal The op costs
  • JDWilsonJDWilson Posts: 90Member
    My daughter went into reception class part time at age 3 with a Walker. It was a good school and she was well looked after.She also went to a child development centre at 20 months for 2 mornings a wk this helped with Socialising and Independance. When her assesment period was over they suggested she attend a nursery a couple of mornings a wk She enjoyed painting and singing with the other kids.She went to a mainsteam school and most of the time things were good. She enjoyed school and I don't think her early start affected her at all She is very sociable and will always make friends even If she doesn't know anyone.She wears 2 splints can "walk" and has a wheelchair for distance. There is a group on FB called helpkidswithcerebralpalsy on there you can talk to other parent's going through all kinds. YOU are NOT alone.If you post something on there Someone always has something to say Quickly because it's on the wall and all that are in the group can see it without looking. This is Good on here But unless You are looking for New users or comments you can be waiting a long time for a reponse. Good Luck and we may Chat sometime in the future.
  • b8sb8s Posts: 33Member
    My daughter has 4 limb cerebral palsy and has no independant movement. She speaks well and loves the company of other children. She will be 4 in february and has been attending main stream nursery since she was 3. My advice would be get referred to Educational Phsycologist as soon as you can. If your child needs additional support, it will be given, but it is a long process to get funding. Then suitable training has to be given and or equipment ordered.
    It's really worth it; Alice loves nursery and it's nice for me that they do a lot of her physio and portage now.
  • leosmumleosmum Posts: 1Member
    Hey mel we have recently come back from st louis missouri after my son leo having sdr and it was the best decision of my life if you want to know more call me on (number deleted as per forum rules) this goes to anyone else interested , trust me you will not be disappointed we got back sunday 12th dec and leo also has heel cords and tendon release done on both legs , Joanne x
  • JDWilsonJDWilson Posts: 90Member
    If you want to get in touch and exchange no's etc You cannot do it on here BUT If you were to go to helpkidswithcerebralpalsy facebook page you may be able to contact each other to discuss SDR or other things. There are others who have also been to St Louis and had this treatment and they can be contacted on that page. If you were to put a message on asking anyone who has had the treatment to reply it would be up to you to follow this up and ask for contact or friendship you could then Personal message your chosen support for advice/answers. hope this helps and you get the advice you need.There has been some Great stories in Take a Break about the St Louis hospital and SDR you may be able to contact TaB to ask for copies? GOOD LUCK xxx
  • cherylguillotcherylguillot Posts: 1Member
    hiya my name is Cheryl. When i read your story it made me smile.Your son sounds exactly the same as my young man used to be.Jordan is now twenty years old and didnt walk without his K walker or callipers intil at leat four.My goodness i remember how worried i was but believe me he is amazing now. He has spastic quadrapligia left side worse than the right. but honest he is as able to do most things in life. he walks with a limp but has never let his disablity get in his way..he sounds so like your little one and i just want you to encourage him as much as you can...push him and i promise he will do so well!! jordan now attends college studying sport!! has trials for the England cp team..and has a stunning girlfriend...i promise he will succed as long as you encourage him..when he falls just be there to pick him up...thats if he lets you!!! i wish you all the luck in the world and like i said Jordan was just the same at your little ones age xx
  • curliesue2curliesue2 Posts: 6Member
    Hi all i have a two and half year old daughter with sd cerabral palsy with slighty affected left arm too. She was diagnosed nearly a year ago after much twoing and froing from health visitor,doctors and hospital as no one could diagnose her when i knew that something was not right (shes my 3rd child). I too feel like it has been a case of thats what is wrong with her there you go now deal with it. She cannot stand unaided or walk unaided. She gets around quite niftly crawling.
    Physio was once a month and up until yesterday i had'nt seen a physiotherapist since October last year. She was refered for Botox last August and i had a phone call before xmas to say that she'd basically been forgotten about and did i still want her to be put forward for a referal!! I've had to do a self referal to O/T for a bath seat for her as everyone that i spoke to kept telling me to buy baby bath seats !!!????
    I've been trying to get some kind of walker for her off Physio or her consultant for ages but they've been saying that she does'nt need one!!!??? I've been fretting terribly as she starts nursery and keep thinking of how other kids will react to her if shes crawling around, but finally yesterday her new physiotherapist came and she is getting her walker next week. I did'nt know whether to laugh or cry. Its so emotional picturing them up on their feet and getting around. I can't wait and am a little less stressed about her going to nursey now.
    I feel more positive now and can now look forward to planning my wedding as we wanted her to be walking of some sort so she can be our beautiful little bridesmaid and walk down aisle with her big brothers by her side xx
  • harrybo4harrybo4 Posts: 2Member Listener
    Hi all

    I apologise dearly for not replying sooner! My computer has been out of action. It has been heartwarming and reassuring reading all of your messages. I am sti-ll looking into SDR but it is nice to know many of you have been there and have a v positive story to tell! Harry now is doing well and attends PACE 1 afternoon a week , he is still unable to stand or walk unaided but whizzes around with his funky new green kaye walker. He had a brain scan under general anaesthetic 4 weeks ago and we are still awaiting to hear results.

    Harry amazes me every day, I have days where I cry so much as he is desperate to play football with his big brother and days where i cry with amazement at the things he has acheived and his personality. He is the happiest most determined little boy. I worry about the future but try not to think too much about it. It is great to hear such similar stories as it can be so isolating sometmes, i rally do appreciate your feedback although 3 months late with my feedback!

    So SDR? One minute it seems a great idea and the next I read about the risks, the pain and how it could make things worse, just not sure what to do!!

    Look forward to hearing from you..

    Mel xx
  • sam2017sam2017 Posts: 1Member Listener
    Hi im new 2 this. My son is 22 months old. He loses balance and coordination quite easy, he struggles using his left side especially his arm and hand, he still struggles with crawling and rolling by getting stuck in positions and loss of balance. Hes not walking but will walk in a penguin way using walker and furniture. He also puts left leg forward over his right leg when cruising against furniture. 

    Hes under paediatrictian, physio, speech n language and occupational therapy. Still we have nothing to go on yet they said it could be neurological and possible CP. 

    Sam x
  • KelnogKelnog Posts: 2Member Listener
    Hello my little boy is 3 in may 2019 he has cerebral palsy and he has a k walker as he can't walk unaided he crawls a lot he also is at mainstream school to get connection with other children his age  i relate to a lot of your messages I he bangs his head in alot of frustration as his a speech isn't great and he has weak left arm also has to wear glasses so waiting for appoiment  at moment got a OT and physio and speech and language  classes to help he has his walker and medical boots and also a bath seat for safety and also a hight chair now as he was making him self angry and fulling out his other chair they delivered a ramp for back door to get in and out just claimed dis as was told to but been refused so did mandantrory reconsideration but they also said no so now court as his safety in day is not good banging his head and hurting his arm clapping  in him and needs help feeding and also help bathing for safety doesn't sleep he have 3 to 4 hours so court will be fun  please help if you know anything u think I should no or be helpped with many thanks kelly
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