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CP Progress

This discussion was created from comments split from: My granddaughter has been diagnosed with CP.
Replies
Hi @Pamela1
It sounds as if your granddaughter, Charlotte-rose, has a number of physical challenges that you, and the other people that love and care for her, are doing an excellent job of supporting her with. Tube feeding and the transition to food being introduced, is potentially an uncomfortable and frustrating procedure, it isn’t that unusual for children to protest. However, it sounds as if your granddaughter is becoming very distressed so I think you are absolutely doing the right thing in reaching out for support.
Cerebral Palsy, no doubt you are aware, is a very diverse condition, that can impact on each individual in a way that is specific to them. Finding the best clinical solutions to challenges faced by the person will normally require individual, face to face assessment. This is especially true when it comes to issues of feeding and swallowing, as errors can have such dire consequences. Therefore, it would be inappropriate for me, or anyone else, to try to offer you any advice on this matter over the internet. Your granddaughter needs input from appropriately qualified people that have access to the necessary diagnostics and have thoroughly assessed her. My expectation is that they will probably be part of a multi-disciplinary team, possibly lead by a specialist Speech and Language Therapist and with an Occupational Therapist advising on issues related to posture, positioning and seating. If your granddaughter isn’t already receiving this sort of support, or on the waiting list to receive it, I would advise that your family speak to the person co-ordinating her healthcare to express your concerns and ask for a referral to a specialist team.
For your information, here is a link to some information from the British Academy of Childhood Disability describing the ‘Pathway for children with feeding problems’ https://www.bacdis.org.uk/policy/documents/feedingpathway.pdf . It illustrates the sort of specialist support that can potentially be made available.
If sounds as if your daughter might benefit from receiving some peer support from parents who have had similar experience, perhaps she would like to check out an organisation called Half PINNT: http://pinnt.com/Support/Half-PINNT.aspx
Best Wishes
Jean
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist