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Unwanted gastrostomy

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trogelvis
trogelvis Community member Posts: 2 Courageous
edited January 2019 in Cerebral palsy
Hi, my 13 year old daughter has athetoid dystonia cp. She is healthy, lively, gets around the house independently, uses Makaton and communication aid, cognitively bright.

New sl t in august, referral for fluroscopy which showed silent aspiration. Stated daughter has to have tube a d go nil by mouth. Cu recently has thickened  liquids and soft foods.

Daughter has never had chest infection, no weight loss and chest x-ray has come back with no damage to lungs. Daughter and family do not want tube, she loves food. Surgeon agree s not to go nil by mouth.

Sl t is dismissing this view and the psychological impact and risks of tube. Feel daughter is being forced down this path. does anyone have any experience of advice?

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  • forgoodnesssake
    forgoodnesssake Community member Posts: 512 Pioneering
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    Interesting...my son (20 athetoid, AAC etc) has all his food pureed due to ungraded swallow and poor oro motor control.  He has had a couple of videofluoroscopies, most recent about 4 years ago?  Showed some slight aspiration and slow transit and "gathering" in pirifom sinus (think that's the name) but 2 SLTS (one very AAC knoweldgable) felt that just being very careful with food texture was Ok for the time being at least.  But to just be very aware of any chesty sounding episodes or chest infections (which he has never had)
    He has always been very skinny and light so has supplements but no thickened drinks.  He actually asked the dietitican a couple of years ago if he would be better off with a tube (he thought it would be quicker...) but she said that they never did that if other factors were OK, like weight, and if the dysphagia SALT was happy.  So can't really offer advice, just our experience.
  • trogelvis
    trogelvis Community member Posts: 2 Courageous
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    Thanks , I think it is a bit of pot luck as to who is involved, they are very risk aversive here. Good to hear your son is coping fine. X
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
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    Good to meet you. I have not had to deal with this situation so my advice would be limited. What I would say though is through my experiences with other medical interventions that I have had, it is important that your opinion and that of your daughter are heard and taken into account.

    Scope
    Cerebral Palsy Programme Lead

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