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Hi There

Guest
Guest Member Posts: 1,968
edited September 2014 in Children, parents, and families
hiya thought i would introduce myself and sorry but i cant find a section well a right one where to post .
ive just found this site

im a 34 year old mum of 7 children my daughter who is now just 11 years old has i think what they class as mild cerebral palsy not sure of the specific title

i always knew she wasnt right from the age of about 12 months she didnt seem to want to sand and whne we tried to help her she stood weird e eventually got her reffered to see a consultant who diagnosed her at the age of 2 and a half i was of course devastated questioned myself blamed myself
she started off being given special shoes which helped her to walk gave her a little balance . then she went on about the age of 4 to having a splint i mustsay though it is only in her left leg not much is noticible the rest of her leftside maybe very slightly in her arm but she manages great

anyway shes has had regualr physio since regualr plaster casts done to help with stretching she underwent botox injections 4 in total as this didnt help she then underwent an operation when she was 6 that ended up a week in hospital and then 6 weeks in plaster back into splints when they fitted her we had real problems with fitting etc since then she has had more plasters casts last year she spent 6 weeks over the summer holidays in them much to her disgrace they now say she will need another op moe than likley because her foot is now so bad again it is about an inch or so shorter than her good leg
weve had problems with appointments with seeing the ortho consultant we were supposed to atted later this month but yet again they cancelled

we applied for dla 4 years agoand got turned down we are in the proces of reaplying with social services helping us with the forms so cross fingers there

she refuses to do her excercises and we have consant battles with her to wear her night splint sometimes i feel like im hitting my head against a brick wall with her sometimes i sit and cry cos i just feel sorry for her shes due to go to secondry school in september and im scared for her kids are nasty she has been bulllied and kids have takenthe mick out of hr walking i just feel all on my own with this ive never spoken to anywhere like this before suppose im just looking for a little support and hopefully show some to to other parents in the same situation

sorry for the long post just not sure what to say ( she says )

thanks again

annex

Comments

  • Guest
    Guest Member Posts: 1,968
    Hi there I am quite new to this site,I must say it is quite informative
    I have a 19 mths old son who walks has problems walking (walks on his tip toes),very unsteady,he also has problems gripping objects,although he is getting better and he has sight problems,all of this is on his left side.
    He is being see by a pediatrician ,who recently said she thinks he has mild cerebral palsy.I would just like to know,if mild cp would still come under one of the different types of cp,and how would it affect my son.
    His physiotherapist have also decided that he should start botox injections as the casting and piedros is not helping.I am very worried as his condition is not improving,he sometime would cry out to me pointing at his foot and legs i don't know if it means that he is pain.
    He recently had a mri scan.
    I am so confused,don't know if I am worry for nothing.Also i would like to know what is the exact procedure with the botox injection?
    please any information would be of great help.i am so worried.
  • hfitz12
    hfitz12 Member Posts: 5 Listener
    Hi my son also has mild CP and yes it is the same he was only diagnosed recently he also walks on his toes but still waiting to see a specialist with my little boy it has only affected his legs it sounds like to the type of CP your son has is Hemiplegia which affects one side of the body but his physio should be able to confirm this.
    My son is classified as mild because he can walk unaided with it but awkwardly at times. he has been put in Piedros and has physio nothing else has been said at the moment.
    As for Botox i can only tell you what i read and that is that it is an injuections to relax the muscles i dont beleive its a permanant fix though.
    Hope this helps all the information i have got on this condition is from internet, books and places like this as i said still not seen a specialist.
  • Guest
    Guest Member Posts: 1,968
    Hi Santana
    my daughter has spastic diplegia and has just had botox.it's relatively minor ,they go into day surgey and apparently depending where you are they are either sedated or like in my daughters case put under GA and given the jabs. they secret to the botox is to get lots of physio in afterwards as it only lasts 4-6 months.
    i have a website for my daughter, the address is www.freewebs.com/siobhantanya i have all the diary entries for botox in my blog and she has also had an op to repair her clubbed foot but they done tendon release at the same time,the article which appeared in pick me up magazine (dramatized i may add) is also on there.
    if you have ayhting else you'd like to know please feel free to ask.
    evelynxoxo
  • Guest
    Guest Member Posts: 1,968
    Hi thanks for the welcome. and the advice. the site is beautiful and inspirational. got the results of his mri scan and it confirmed that he has spastic diplegia.
    Going thru the different motions thinking I did something wrong etc.hope to meet all you you soon,take care
    santana
  • Guest
    Guest Member Posts: 1,968
    Santana
    i'm sure you done absolutely nothing wrong but all of us here have been there and gone throught the exact same emotions. we're all here if you need us.
    lots of love
    evelynxoxo
  • VILA
    VILA Member Posts: 29
    Hi Santana and welcome to this great site!

    I have a 12 year old who has had botox, serial casting, multi-level surgery to muscles and just undergone multi-level surgery to bones.

    I have various threads on here, have a look and you will see all about him. He has mild cp!

    if you have any questions, there are loads of us here that have all 'been there, done that' and we can get back to you, we are a lovely bunch and of course, the scope people read the threads and offer help as well which is really lovely.

    karen x
  • Guest
    Guest Member Posts: 1,968
    hi there, im a 21 year old student with left sided hemi plegia... i cant use my left arm at all .... get tired wlking, muscles twitch... balance whats that lol .

    guess im on a bit of a downer today... most of the time it doesnt bother me and i just get onwith it.... but today itsgettin me down, watched video on youtube and been in tears ever since... sorry whinning


    to all mums with kids of cp dont despair things can be ok... they never expected me towalk or anything and im now in my inal year at university... eek!

    take care all
  • redicane
    redicane Member Posts: 4
    Hi there angel star.

    Thank you for posting on the forum. I am a mum to a little girl who is like yourself left hemiplegic and reading your post has given me great hope for her future.

    I wish you the best of luck with your studies.

    Eileen
  • sarahben01
    sarahben01 Member Posts: 1
    [quote name='AngelsStar' date='Nov 16 2007, 11:00 PM' post='14224']
    hi there, im a 21 year old student with left sided hemi plegia... i cant use my left arm at all .... get tired wlking, muscles twitch... balance whats that lol .

    guess im on a bit of a downer today... most of the time it doesnt bother me and i just get onwith it.... but today itsgettin me down, watched video on youtube and been in tears ever since... sorry whinning
    to all mums with kids of cp dont despair things can be ok... they never expected me towalk or anything and im now in my inal year at university... eek!

    take care all
    [/quote]

    Hi there. Just a quick message to you. I cant imagine how you feel as I dont have CP but my young son does. You are an inspiration going to uni. I cant imagine what its like having a disability but I do hope you feel better in yourself soon and good luck in your final year.

    Love Sarah x
  • sadie123
    sadie123 Member Posts: 1

    Hello Angelstar

    Don't be sad. You are an inspiration to us all. Look what you've acheived! Wow. My little on has RS Hemi and I hope he does half as well as you. Your parents must be so proud.
    Have you tried Hemihelp site? I find it great.

    Take care and hugs

    Lyn
  • ionarowan
    ionarowan Member Posts: 4
    Thankyou!

    You are an inspiration.

    My little girl has diplegic CP. I have many tears over her but we work hard and I am determined for her to have the most normal life possible.

    Thankyou for posting!
  • Kate1234
    Kate1234 Member Posts: 1
    Hi Anne,

    I read your post and didn't want to read and run! My daughter is only just ten months so I can't offer you any words of wisdom as I am just embarking upon this journey but I know already how much I have hurt for Sydney-Mae, and that is without her experiencing how mean other children can be. I am glad you have posted here as there are lots of other parents who understand how you feel and this is where we can all support eachother.

    I am sure you are doing an amazing job and all you can do is be there for her when she is sad and of course try to protect her from some of the cruelty out there! I must admit that is what I am most terrifed of- when she hits your daughter's age and tennagers are horrible to her but I know we will get through it all ok, as you guys will.

    Lots of love,

    Aimee.
  • JDWilson
    JDWilson Member Posts: 90
    Hi Kazza your post is an OLD one wondered IF you still use this site. My daughter is 11 and going for Multi level surgery I would apreciate If you or anyone else who's child or self has been through this Would reply. My daughter is having 2 ops in Feb 1st on bones 2nd 6 wks later an muscles and tendons. Obviously worried and would like to hear how others have got on with thier ops and Recovery. Thanks Julie.
  • ac310
    ac310 Member Posts: 4
    edited September 2015
    Hi,

    Again Congratulations on attending university!

    I am currently doing a piece of research that looks into how inclusive university is for students with CP.

    I was wondering if you could help me please.

    How did you choose your university?
    Do you feel you received all the support you needed?
    Would you offer any advice to future students?

    I would be delighted to hear from you.

    Kind Regards Alice

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