CP Progress

Pamela1

This discussion was created from comments split from: My granddaughter has been diagnosed with CP.

Pamela1

Hello our girl Charlotte-rose will be 1year old in March she has come such a long way. Today I write as hoping for some advice, while Charlotte-rose is coming along we have concerns, at the moment she is still not able to sit up on her own, her head control is still not great and she struggles to lift her head . We try everyday and she gets really frustrated when she can’t manage, she favours the right hand side and still has frequent tightening and loosing of her arms and legs, while doing tummy time she does extend her full body almost light a flying motion and lifts her head for a few seconds. She still is fed by tube and does take little tastes of purée food but we have to be careful her swallow seems to be working I think it’s more of her tolerance for liquids is the choking hazard and because of her head control it is really difficult, her tongue is in and out her mouth frequently and she produces a lot of saliva this can cause her to choke at times and she holds her breath, some days are really difficult as Charlotte-rose will have screaming episodes that can last for hours at a time. My daughter finds these times difficult as she doesn’t know what to do. Any advice please?

Pippa_Alumni

I wonder if @Jean_Scope or @KirstenNutritionAdvisor could offer any advice with the above? 

Jean_OT

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