Cerebral Palsy
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new to this! Hemiplegic son

alik2010alik2010 Member Posts: 7
edited June 2014 in Cerebral Palsy
Hi i've just been told that my son has hemi-plegia, which is a form of cerebral palsy but i'm very confused as to what this means and how it will affect him. His right side is already affected and he wears boots already. I just wondred if anyone could help me on this? He is just short of two and a half, walking but very unsteady, and still not speaking. I'm just very worried as to what the future is for him.
Thanks

Replies

  • renacahillrenacahill Member Posts: 145
    Hello. You will find lots of help in the Scope website and in previous posts. This site also looks very helpful http://www.hemihelp.org.uk/ Try to meet up with mums in your area who have children with CP. Hopefully physio, OT, portage, hydrotherapy are available to you or will be shortly. Don't panic, your little one sounds as though he is doing very well. The shock will ease and life eventually get back on track - maybe a different track - but one that is still going somewhere positive!
  • alik2010alik2010 Member Posts: 7
    Thankyou, will have a look at that website now. An appointment has come through for physio next month, i'm just trying to take each day as it comes for now and try and not worry about the future.
  • alik2010alik2010 Member Posts: 7
    HI, your daughter sounds like she is doing well...I just seem to be constantly watching ethan now, seeing things that i didnt before.
    I've no otther children, just me and Ethan...finding it hard having no one to really talk about it, and just feel quite lonely about it all...coming on here helps and reading how all these children are so brave and don't let anything hold them back xx
  • JDWilsonJDWilson Member Posts: 90
    I think that is the best thing you can do. Take it one day at a time. I have a daughter with Spastic Diaplegia CP she is 11 now. It has been hard But We have pulled through. Samantha was diagnosed when she was nearly 2 She has had Splints(AFO's) Botox casts muscle relaxants now It's time to look at surgery which I'm finding hard. She can walk a little is a great swimmer can ride a Trike Goes to mainstream school. Have you got any other children? have you asked yourself what the Future holds for them? No-one knows But these kids Defy the odds and prove so many people wrong about their expectations of them. I have spent a lot of time worrrying about treatments operations Life It hasn't changed anything. You have come so far so fast Try to keep possitve There could be bad days But we ALL have them. Good Luck. xxx
  • b8sb8s Member Posts: 33
    Hi,
    even when you have people around it can still be lonely as it is very hard for them to understand how you feel as a mother. My husband and parents are great, and I am able to be open with them, but I can tell by their faces no matter how much they may want to, they cannot understand how I actually feel. This forum definately helps.
    A practical tip for the coming months and years: write down any questions you have as you think of them. Appointments can be very overwhelming, especially in the early days, and you often leave and haven't asked half of the things you wanted to.
    Best wishes for you and your little one,
    Charlotte
  • JDWilsonJDWilson Member Posts: 90
    Thankyou She is a GREAT kid. Frustrating and annoying but still a great kid. I lost track of that when we got her diagnosis focused on the CP rather than the child. I felt SO guilty.I know about feeling Isolatated and lonely Why me? Why Sam? Why? No-one knows youve just to do the best you can. Is there any other parent's with children with CP you have contact with? I have found a really good Facebook page where you can talk to other parents about the problems you are facing. it is called helpkidswithcerebralpalsy Someone always puts something on so it is a active site. On here it is good but you carn't have personel contact and sometimes you could do with the support sooner rather than later. You and your child will be OK but throughout his life you may find you need support It is out there Just ask. Also the Scope response can answer Questions you may have But it's not like Being through it. Have you seen Take a Break this last 2 wks there has been children with CP in there wearing thier Braces(splints) Good Luck and Take Care.
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