Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Early CP signs in my preemie. Any advice?

hollyfm91hollyfm91 Member Posts: 2 Listener
edited October 2017 in Cerebral Palsy
Morning all. My daughter was born at 28 weeks gestation. She had a grade 2 bleed on the brain along with some damage, this showed sign of repair around her due date which was reassuring. She's 7 months old now, 4 months corrected. She can't roll, though she tried desperately. Nor can she laugh. She has severe reflux and has had swallowing difficulties in the past. She has a weaker right hand side, significantly her right arm hits herself in the face often (her bleed was her left side of the brain so we were told it could effect her right side) she also has a lack of mobility to her arms. She'll use her legs to try and roll and uses her legs and feet to hit her toys to play instead of her arms. She also has shaken legs at times. I'm aware these all point to CP signs. Just wondered how common they were? I'm aware she's very young, we see her consultant next month so will be voicing my concerns then. I'd just like any advice really, I don't want to be fobbed off for over reacting I just know from my 3 previous children she's doing things differently. ( not that I'd change it for the world ). Thank you x

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @hollyfm91
    Welcome to the community, I think parents instinct is great and Im glad you are seeing your consultant.  Why do you think you might be fobbed off?

    Have you seen a health visitor? What are their thoughts? When mine were little we had red health care books, do they still have these? If your HV has made any notes about your child's progress it would be good to take them with you.

    Have you thought about writing your own notes so you dont forget any of the things you would like to discuss, lots of people end up overwhelmed or flustered and some points might slip your mind.

    You could also film your child if you can to show the rolling/shaking/play differences.

    I hope you feel heard by the consultant, do let us know how you get on.
    Scope
    Senior online community officer
  • hollyfm91hollyfm91 Member Posts: 2 Listener
    Thank you @Sam_Scope. My son has global delay and it took over 3 years for his diagnosis despite constant signs so I'm just prepared for battle again I think. Our consultant is brilliant and my daughter is monitored every 4 months by them so I'm hoping it'll be different this time. She has many issues from being born so prem and CP has been something we've been aware of since we were informed of her brain damage. Yes she still has a red book however the health visitor has only ever seen her once. She's been to the gp for a developmental check up but because she could smile we were told she was hitting her mile stones. In some aspects she's just a regular 4 month old baby (her corrected age) however her right arm is always stiff shut. If I try and clap her hands etc her arms go stiff, her legs are floppy and easily moved in comparison. We weren't initially told about her brain damage until after a few weeks and it was dropped into conversation in the NICU as if we knew about it so I think we've always been slightly worried aspects will be hidden. I'm so conscious that the doctors only see the babies for 20 minutes in the appointment and if they're having a good day it can look as though there's no cause for concern. I also don't want to look like I'm creating issues but my instinct just says something's up. Thank you for your reply, it's so difficult! X
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    It's understandable that you are concerned! Best of luck at your appointment, Im sure there will be other members along to share their experiences too. 

    @Tabbytink joined this year talking about her preemie baby and CP so you might like to look at their post and connect :)
    Scope
    Senior online community officer
Sign in or join us to comment.