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Advice needed

April2018momApril2018mom Member - under moderation Posts: 2,772 Disability Gamechanger
I’m sure that I have not mentioned this before. I seem to have a baby who frequently turns blue around her lips and scares me. She does this often at night as well. I have taken some photos of her lips and upper extremities for evidence. The pictures are on my phone. She is four weeks old today. I have also heard some funny sounds. So today I decided this was abnormal. And I called the pediatrician for advice. 

Has anyone else had a baby with spina bifida and a breathing difficulty? What were the warning signs? I will definitely send a email with the pictures tonight to a pulmonary team requesting advice. It is likely we will be readmitted for additional observation and tests. I will keep you updated.. 


Replies

  • jadealyssajadealyssa Community champion Posts: 63 Courageous
    Hi @April2018mom
    Sorry to hear this about your baby it must be very frightening for you.
    Does your baby stop breathing or does the breathing change when this happens? 
    Sometimes if they have trapped wind it can cause a.blue tinge around the lips and they can make odd sounds...
    Also my.son has CP and as a baby he suffered with acid reflux which begun with him constantly having a blue tinge to him and making really odd sounds which I later found out that it was the acid causing the sounds as it came up to his throat.
    Please let us know any progress you have
    I hope your find a resulation to this
    Wishing you and your baby the best of luck 
  • poppy123456poppy123456 Community champion Posts: 18,398 Disability Gamechanger
    HI,

    We are not medical professionals and will not be able to give you any advice regarding this. Rather than wait for a pediatrician then i'd advise you to either ring your GP or health visitor with any concerns you have.

    Although, i do agree that a baby that has wind can often make strange noises.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • woodbinewoodbine Member Posts: 407 Pioneering
    Hope everything is ok, you are both in our thoughts x
  • April2018momApril2018mom Member - under moderation Posts: 2,772 Disability Gamechanger
    It is not wind.
    I have gas myself and I know the sounds associated with that. It honestly sounds more like a honk sound that sounds like it is coming from her neck 
  • poppy123456poppy123456 Community champion Posts: 18,398 Disability Gamechanger
    edited February 5
    If you're worried you should either call 111 or speak to her GP. We are not medical professionals and we won't be able to give you any medical advice. https://www.nhs.uk/using-the-nhs/nhs-services/urgent-and-emergency-care/nhs-111/

    When babies have wind they can often make very strange noises. I know this because i've got 3 children. A baby with wind is completely different to an adult or order child that has it.


    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • CressidaCressida Member Posts: 387 Pioneering
    It is not wind.
    I have gas myself and I know the sounds asjsociated with that. It honestly sounds more like a honk sound that sounds like it is coming from her neck 
    Sorry to hear this. As others have said please see your GP. When you mentioned the honking I thought straightaway of croup.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 5,573 Scope community team
    Hi @April2018mom.
    I hope you get some feedback about this soon from your GP. As mentioned above, the noises a baby will make when windy can be odd and very wide-ranging. Let us know how you get on.
    Senior Community Partner
    Scope
  • April2018momApril2018mom Member - under moderation Posts: 2,772 Disability Gamechanger
    A quick update since I don't have endless amounts of time. 

    I went to see the pediatrician two days ago. I took a video of her breathing and showed her some photos as well. We were then re admitted last night. Early this morning we talked with a pediatric ENT doctor who has done some tests already. I also met with the pulmonary team who have also performed tests.  

    It is not wind. They have ruled that out. I did watch her during feeds but Francesca has not had any of the usual signs, squirmy legs, crying, making a fuss as I feed her, or turn red. Plus I doubt that wind causes stridor. I will update with more information later by the end of this week. 


  • poppy123456poppy123456 Community champion Posts: 18,398 Disability Gamechanger
    Your first comment said you had called the pediatrician for advice....

    All of this just proves that an internet forum is not the place to ask for medical advice because as advised we are not medical professionals.

    Gad to hear that she's being investigated with tests.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • April2018momApril2018mom Member - under moderation Posts: 2,772 Disability Gamechanger
    UPDATE
    We are now home. Francesca is doing better. They discharged us today but want to see us again in a week or so to see if she is better. 
  • poppy123456poppy123456 Community champion Posts: 18,398 Disability Gamechanger
    @April2018mom Hope she's better now.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
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