How to stop 5yr old strangling herself overnight!

[2old2beamum]

Anyone out there to give help please? DD fed overnight nocturnally active I was up 8 times last night to untangle tube. Have tried tube down pyjama leg stuck down with plaster,feed pump at bottom of bed. Please help I am bloody knackered!!

Does DD eat as well as having tube feed? If not - is there any reason why she could not be fed by day instead of overnight? Then you could get some sleep. My DD's pump comes with rechargible battery and is in rucsack which can be worn on back or hung on chair.
My DD was fed overnight when 1st tube fed but got so fed up with her coughing and me having to check that ng tube was still in stomach and not lungs that I switched to day time feeding and have stuck with it ever since even though she now has mic-key button.

Hi there yep we have had this trouble my dd now pump first thing in the morning at dinnertime at 4pm and in the evening. hth

Thanks for reply. No DD is not able to eat as she may inhale (poorly repaired cleft palate and a syndrome) She has a 1 1/5 hour journey to school so we have lost 3 hours a day at least. School are able to feed her at lunch time for 2-3 hours so time is at a premium.Fortunatey she has a PEG so no fear of this coming out also problems with diarrhoea so increasing feed not an option.

Know what you mean my dd has her tube fed at 5.30 every morning.I would speak to her feed nurse as this is quite a common problem and can usually be sorted.

My DD is fed from 10 am til 5pm. She is on the school transport for part of this time in the afternoon (3/4hr). How does your DD get to school - is it not possible for her to be fed during the journey or is she likely to be sick if fed whilst on the move? (or do the transport dpt have a policy which forbids feeding whilst travelling!!!)

Hi all, my gut reaction is to go with bigbluebus. It would be possible for her to be fed on the school bus but as you say LEA have a policy no feeding. However her older brother is fed on transport (he is fed 22hrs/day this was a battle but we won) My only problem is although not walking she is very mobile and looking at it from her perspective am I being fair keeping her strapped to her wheelchair nearly all day. It may be the only way--who is going to tell her?
Thankyou

You can get a rucksack that is specially adapted for the pump and feed etc.The nurse should be able to get you one.

And if she isn't able to carry the back pack, you can get a trolley backpack and put the pump in that. We did that for my son who, although mobile is very wobbly and couldn't carry the backpack. He is now 6yrs old and been completely tube fed since birth.5 years with NG and now has a button.

He was fed 20hrs per day for most of his life as he just couldn't tolerate boluses. However in November we tok the controversial step of stopping the formula and giving him blended up food down his tube...........he now has 2 measl, 2 fruit juice snacks (all boluses) and and overnight feed. he has conrtol over his bowels, we've manged to stop 3 of his medications, he's growing better, his bloods are normal fo rthe 1st time in his life and he is simply just healthier!! Dieticians, now supporting us ( of a fashion) but really not that happy, in spite of all the positives.........but he that's another thread all together.

Hope you can find a solution for your wee girl. xxx

2oldtobeamum Does your DD have a (supportive) dietician you could discuss the options with. eg could she have higher calorie feed so she needs less of it, could she then have fluid bolus in the evening to make up fluid intake etc etc.
Incidentally, no one from our LA has ever mentioned a problem with tube feeding on school transport - had just heard on grapevine that in some places its not allowed. We have never had a problem with it - escort on bus has just been told to turn pump off if it alarms - this has only happened once in 3 years!
Hope you find a solution soon and get a good nights sleep.