Cerebral Palsy
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Looking for Advice on Getting A PEG or Feeding Tube

Laith_RitchieLaith_Ritchie Member Posts: 7 Listener
edited October 24 in Cerebral Palsy
Hi all, I am a young adult with Athetoid Cerebral Palsy. I am currently looking into having a PEG or Feeding tube in as I am concerned about my calories and fluid intake. My question is, is it my right to request this or not? Also, what would be the best avenue to go down? 
Thank you so much for your help and advice.  :)
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Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    Hi @Laith_Ritchie
    Good to talk with you again. What has made you concerned about your calorie and fluid intake? Is the first thing I would like to talk about. It's is a good idea to explore all of your options with your G.P. and other medical professionals before deciding to undergo invasive treatment such as this.
    There are fortified shakes that can enhance your calorie and liquid intake. Things like Fortisip and Nutrament.
    We also have some information about Tube Feeding that you might find helpful. 
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Laith_RitchieLaith_Ritchie Member Posts: 7 Listener
    Hi @Richard_Scope
    I just feel like I am not having enough nutrition and fluid. I thought with a PEG or tube it would be easier for me to monitor and to manage what is going in. I have a lot of friends who are exactly like me and they have PEGs and they eat. I just think that a PEG would give me flexibility around my life. 
    I have tried all the different methods, and they don't really work. Have you got any advice on this? Lovely talking to you @Richard_Scope

  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    The first thing you need to do is have a discussion with your G.P. and they will probably refer you to a nutritionist. It would make eating less arduous and time-consuming for you and like you say help you gain more control and flexibility in your life.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Laith_RitchieLaith_Ritchie Member Posts: 7 Listener
    @Richard_Scope wouldn't my consultant be better for this kind of thing? 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    If you have regular access to a consultant then even better @Laith_Ritchie! Apologies, not many people I speak to have regular contact with a consultant  :)
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Laith_RitchieLaith_Ritchie Member Posts: 7 Listener
    Thank you for your advice @Richard_Scope . I don't suppose you know if I could request pump or Buless feeding? I know I am thinking way ahead but I just like to plan? 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    There are pros and cons to  both @Laith_Ritchie
    I'll try to outline some for you.

    Continuous Enteral Pump feeding
    Pros:
    Slow hourly feed rate has may aid feed tolerance. Improved control of blood glucose levels due to the consistent delivery of carbohydrate. Availability of mobile pumps and back-packs allows feeding to continue outside the home. Less labour-intensive. Allows overnight feeding.
    Cons:
    Attached to the pump for long periods of time which may restrict mobility/activity and quality of life. Requires some technical ability. Prolonged presence of a giving set may increase the risk of tube displacement.

    Bolus Syringe Feeding
    Pros:
    Mimics a normal pattern of eating. Allows for greater mobility/activity as the patient is not tied to the pump for long periods of time. Allows greater flexibility for the patient with regards when the feed is administered. Less equipment required.
    Cons:
    The patient may not tolerate large bolus sizes. Patients with poor grip strength may struggle to push down plunger or hold syringe for the time required to administer the feed. Syringes need to be cleaned and stored after use.

    You will need to decide with the support of medical professionals which would be the best for you.


    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Laith_RitchieLaith_Ritchie Member Posts: 7 Listener
    Okay thank you for that @Richard_Scope
    I will be in touch if I have any more questions or queries.  :)
  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    Anytime @Laith_Ritchie
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Laith_RitchieLaith_Ritchie Member Posts: 7 Listener
    @Richard_Scope Do you think the doctors will take into consideration that I am tired most of the time? 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    Hi @Laith_Ritchie there can be other reasons why you feel tired all of the time. Have you had investigations into that yet? Once any other possibilities have been ruled out then that will allow them to focus on your nutrition and any shortfalls that may be causing the tiredness.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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