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Motor Disorders Clinic

GuestGuest Posts: 1,968Member
edited May 2014 in Cerebral Palsy
My little boy Aiden is almost 2 and we are currently waiting to see a Neurologist. I am under the impression (and HV) that he has mild CP (spastic monoplegia) he is walking on his tip toes (although he can put his right foot down he is compensating for the left one which is very high off the floor) he is constantly falling over, his speech is not good, he can say around 10 words and a few sounds that i know what they mean, and his behaviour is dreadful- screaming tantrums constantly, probably because the only word he knows how to express himself with is 'Hiyah!!' Anyway, we have been given an appointment for 29th October which i think is too far off but thats another story, at the Motor Disorders clinic (this specific clinic was requested Aiden attend by the neurologist) does this tie in with my theory he has CP do you know?
I am finding this waiting game and the stress unbearable, i am so worried. I know he is mild and i am so lucky and mine isn't the only child to ever have a problem but i just don't know what the future holds and am anxious to get on with any therapies he may need.
I hope someone can help with regards to the clinic.
Many thanks.
Kirstie.

Replies

  • kirstiekirstie Posts: 4Member
    My little boy Aiden is almost 2 and we are currently waiting to see a Neurologist. I am under the impression (and HV) that he has mild CP (spastic monoplegia) he is walking on his tip toes (although he can put his right foot down he is compensating for the left one which is very high off the floor) he is constantly falling over, his speech is not good, he can say around 10 words and a few sounds that i know what they mean, and his behaviour is dreadful- screaming tantrums constantly, probably because the only word he knows how to express himself with is 'Hiyah!!' Anyway, we have been given an appointment for 29th October which i think is too far off but thats another story, at the Motor Disorders clinic (this specific clinic was requested Aiden attend by the neurologist) does this tie in with my theory he has CP do you know?
    I am finding this waiting game and the stress unbearable, i am so worried. I know he is mild and i am so lucky and mine isn't the only child to ever have a problem but i just don't know what the future holds and am anxious to get on with any therapies he may need.
    I hope someone can help with regards to the clinic.
    Many thanks.
    Kirstie.
  • KELLYMUMKELLYMUM Posts: 3Member
    hi

    i dont really knoew if this ties in with cp , have you seen a paedictricain. our paedictricain dx my son straight away has having hemiplegia (mild cp) right side effects his leg mainly he walked on tip toes and fell abit but doesnt tip toe anymre but turns his foot in when walking . We were told by our paed that a that a scan would be pointless has sometimes with mild cases the scan doesnt show any abnormalities. Does his ankle bend correctly Ashton my sons his really stiff that way he walked on tip toes but has got better since wearing a splint. If you havent seena paed i would go to GP and ask for a referal to see one or a physio as I dont really think your HV should be diagnoising.
    swimming is great exercise for lo muscles also trampoling .
    please ask anything if i can help i will but ive never heard of a motor disorder clinic

    kelly xxxxxxxxxxxxxxx
  • kirstiekirstie Posts: 4Member
    Thanks for your reply Kelly,
    To let you understand, my HV noticed Aiden's tip-toe walking before i had mentioned it to her and she asked if we had seen the GP, i said we had and were waiting to get hip x-rays with an Orthopedic Doctor. We had them done and the Doctor at the hospital said his hips were fine but his hamstring was tight so he was referring us to see a Neurologist. I did a bit of research for myself and CP jumped out at me, i knew right then that's what is wrong with my son. The next time i spoke with HV i said i had a fair idea what is wrong and i told her my gut instincts are he has CP, she said "You're good at your instincts" and that to me, without openly agreeing with me said it all.
    Does your little boy wear a splint all day? and did he get it soon after diagnosis? Also, does he get a lot of physio? I'm sorry to ask so many questions but i have no idea what to expect. My stomch is churning constantly, i'm sure you know the feeling!
    Thanks for listening!

    Kirstie.
  • lucysmumlucysmum Posts: 1Member
    Hi There is a website called special kids in the uk, its got loads of info on all different things and you can also get lots of support there as well, it is quick and easy to register. My Daughter has quad spastic cp and a happy litttle girl, she is five. She wears splints all day with no trouble, takes time to get used to them. You do need your little one refered to a physio, that would definately help, and like kelly said a paediatrician, sounds like you are doing all the right things, Debbiex
  • KELLYMUMKELLYMUM Posts: 3Member

    Hi
    Ashton wears his splint through the day still hates wearing it though , he got his splint about 5 weeks after dx, as for physio we see here once very 6 weeks about , she doesnt do anything with ashton just observes really i do stretching exercises on a night time with him just to stretch he calf muscle, sit ups and exercises to improve his truck muscles , i was told by physio that with him wearing his splint through the day there not much of a need to do exercises on a evening but i still do them. Ashton always used to walk on his tip toes but he now never does, the splint as really helped im blessed in the fact that ashton condition is really mild and with time things are getting better for him , he can now walk further still slow though but hes getting there , and his running as improved , you can only really notice that he has a hobble now and then and when hes really tired he turns his foot in. His balance his a bit off but the tramploing has really help and he is gradually getting more adventours (sp)
    How old his your lo , please dont worry yourself , I know what you are going through and some thing arent as bad as you think. xxxxxxxxxxxxxxx
  • kirstiekirstie Posts: 4Member
    Hi Kelly and Debbie,
    Thanks for your replies.
    I know things could be so much worse and i am so grateful for all of my children whatever their 'differences' may be, i am getting to grips with things now and my husband too. I am just anxious to get moving with it all. I really want to see him being able to run and to tell me what is wrong and not hurt himself when he falls over all of which will take time i know. Roll on 29th October by which time i hope to be totally over this lingering sadness that i feel.
    Take care,
    Kirstie.
  • thara22thara22 Posts: 4Member
    No Aiden does NOT have spastic monoplegia. Children with SM only have trouble using 1 arm or 1 leg. Speech isnt affected. From what you have written I think (though I'm not sure) he has spastic quad CP. And, SM is really rare.

    My sister has spastic monoplegia, thats how I know. Dont stress about the future, rather live in the moment. Its hard, however you must stop stressing. Did you find out what type of CP he has?
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