Evasmum: We use a feeding pump at night. When he was fed 20hr per day we used a pump the entire time.We put it in a trolley backpack and he trailed it around with him once he could walk. He couldn't manage any kind of bolus (Portion) at all.
Sub: Poor you and poor DD. It could well be painful? Is it red at all, does she had overgranulation( overgrowth of skin) where the tube enters her tum? It is also possible that she is allergic to the tube and it is causing irritation. If even accidentally touching her clothes is causing her great distress I'd be inclined to think it hurts. SOmetimes too, if it is slightly too loose, some leakage from her tummy may occur and burn the site and surrounding area and that too is painful. There may be some psychological aspect to it, but does sound like genuine discomfort from what you say. What are the professionals saying?
Does she have anything orally at all? If so could you give her ibuprofen/paracetamol a good hour before you have to mess with her tube and see if it makes a difference. ( if not then paracetamol suppositories are available but not very pleasant).1st of all, after the hour is up and pain killers are working, try and accidentally and discreetly brush her clothes with your hand where her tube is, and see her reaction?
ALternatively, does she have sensory issues? Maybe the sensation of it and being strange is too much for her? My DS screamed for 6.5 years every time he had his hair cut because he said it hurt his hair! He wasn't making it up, he genuinely felt it!!......
Just throwing some ideas out there and please feel free to ignore them.
Other than that all I can advise is to be very non-confrontational and as stress free yourself when dealing with her tube. That will be extremely difficult if it takes 3 of you to pin her down. You will approach her tense, expecting her to freak out and she will feel that.
How about getting a tube for a teddy or dolly and let her practice and then maybe get her to connect her own extension sets over time?? Would she manage that?
Somethng else my son does is he develops patterns of behaviour. He wears splints and has to be regularly cast for new ones. Now he is familiar with the procedure, admits freely that it does not hurt, likes the orthotist, but he screams the place down hysterically EVERY SINGLE time. I think that in his head somewhere he believes that this needs to be his response to this procedure. There is no calming, preparing, settling him until it is over. He absolutely cannot help himself.( He has not been assessed but most likely on Autistic spectrum somewhere, high functioning), so could it be somethng similar. I.e. she responded like this initially because it did hurt and not it is embedded in the back of her mind that when someone comes near her tube that is howe she needs to respond?
Hope some of that at least is helpful. xxx