Gastrostomy feeding — Scope | Disability forum
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Gastrostomy feeding

mandycunliffe Member Posts: 1 Listener
Hi having some trouble with my daughters mickey button always really sore and red and getting a lot of discomfort with it she’s had the same button since she was three tried the next size and it’s too big. My daughter is non verbal so sometimes hard to get to the bottom of the pain she gets a lot of leakage around the button too. Just wondered if any parents/Carers had come across any sane problems?


  • Adrian_Scope
    Adrian_Scope Posts: 8,098

    Scope community team

    Hello @mandycunliffe and a warm welcome to the community. I'm sorry to read your daughter is in such discomfort, it must be really upsetting for the both of you. 

    Are you still in touch with her specialist at all? 
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  • Richard_Scope
    Richard_Scope Posts: 2,922

    Scope community team

    Hi @mandycunliffe It might be an idea to speak with your G.P. or practice nurse to help get the soreness under control. We have some information about Tube/Peg Feeding There are a series of short videos that might help :smile:
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • April2018mom
    April2018mom Posts: 2,869 Member
    Hello @mandycunliffe. Welcome! If possible, try getting in contact with her specialist again and asking for some helpful advice. It may be the tube is too small for her now. A feeding therapist may also be able to help you to resolve her feeding problems as well and advise you accordingly.
    Do you have a phone number to call or not? This is always printed on appointment letters usually at the bottom. Or failing that, obtain a email address. If you were discharged from the pediatric feeding clinic, ask for another referral pronto. Hopefully the specialist can help. Best of luck! Say this is urgent. 


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