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Suspecting my 4 month old has cerebral palsy

emma8217emma8217 Posts: 1Member Listener
Hi,

I thought I’d come on here as I really need somewhere to vent what’s been happening over the past couple of weeks. I had a traumatic birth with my daughter - she was term and no clear signs of oxygen deprivation but she was born very quickly and unfortunately the midwife wasn’t aware that she was coming. In the past two weeks she’s become very stiff on all 4 limbs, she isn’t taking her bottles very well and is just so unsettled all the time. When she was about 4 weeks old she had what looked like a seizure episode but it was put down to reflux but now I’m convinced it was a seizure. There’s a lot of other little things she does that seem to point towards CP like toe pointing and different tongue movements. 

Naturally at the moment I’m terrified, I’ve seen 2 gps, the hv, taken her to a&e as I was desparate for some help but they’ve all said because I’m a paediatric nurse that I’m looking out for things that aren’t there but they referred my daughter to a consultant clinic for a review and I’m just waiting on the date of that. Also what makes it worse is my husband, sister and in laws don’t agree either but I just know. I’m just so scared and I guess I’m on here for some reassurance that everything will be ok in the end. I only have my sister who lives 2 hours away and my parents aren’t alive and I just feel I can’t only rely on my in laws when we finally get the diagnosis. Sorry for the essay - I just needed somewhere to talk!  

Replies

  • GILLIAN12345GILLIAN12345 Posts: 4Member Listener
    edited January 16
    I know this may seem frightening but believe me there is much more support for children with CP than there was when my daughter was born 39 years ago i was like you know one believed me until she caught meningitis then i was told as 19 year old mother my daughter would be mentally retarded , they totally got it wrong my daughter is very intelligent and works with me at the charity we set up Kidz aware to help other families she is a full time wheelchair user but this as never stopped her achieving her dreams if you need to talk or need advice my email is [removed by moderator]
  • Richard_ScopeRichard_Scope Posts: 1,223Member, Administrator Scope community team
    Good to meet you. Do not apologise for the length of your post! It's important that you say everything that is on your mind. Some of the things that you describe could potentially be indicators of a child having a condition such as cerebral palsy (cp) but not necessarily so. I think the important point here is that you have concerns and you sound as if you need those concerns addressing by an appropriate person. It would not be appropriate for me to speculate if your daughter has cp but I would suggest that you express them to your daughter’s GP again. Unfortunately, sometimes you have to keep on at the medical professionals!
    I live with quadriplegic CP, I am married and have a daughter. I can agree with @GILLIAN12345 things have improved but can always improve more. CP doesn't stop you achieving it just makes the journey different.

    Always here for a chat, stay in touch : :smile:


    Scope
    Specialist Information Officer - Cerebral Palsy
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