Northern Ireland sufferers and Sub- cutaneous infusion?

Hi everyone, my daughter has been advised to start using the Sub- cutaneous infusion, anyone else out using this? also, anyone out there from belfast/northern ireland that is there for advise? I'm new to this forum, first post, so i'd be grateful for any suggestions/help as we're very nervous about this. many thanks, Geraldine, mum to Rebecca, 12, living with brittle asthma.

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  • Hello Geraldine & Rebecca,

    There are a few of us Adults and some children on this site who use s/c infusion.

    There is some info already on the medical section (4th down on the Talking Points - may need to scroll down a bit)

    I use s/c ventolin and have been since 1994 although now I use it on an as & when basis. It has worked quite well for me although I had to stop using it all the time as my body became tollerant to the drug after a few years.

    When I first started it, it really helped me and kept me out of hospital a little less! I think at 12 yrs she should be able to manage it OK. The needles may seem a little daunting but if you ask for Sof-Sets or Sillouettes which are a little gentler it may help. Once you have got the hang of it, it will be fairly easy to manage. The pump, a syringe driver just smaller than a video cassette in size and will fit very neatly into a bumbag or you can make your own designer bags like I do - colour co-ordinated!

    Anymore questions , please ask!

    Some of the Mum's here may be able to help regards children & s/c.

    Take care

    Kate

  • Hi, my son Sean has been using s/c bricanyl for nearly 2 years since he was 8. He went to hospital daily for one week while we were taught how to use the equipment. Usually this is done as an inpatient but the RBH had no beds and for some reason the respiritry nurse thought i was a capable mum :-) Sean as usual just accepted the inconvience of the syringe driver and needles. I have heard people having trouble getting supplies but fortunatly the RBH linked with our community team and all went smoothly. On week two Sean was going on a kick asthma holiday (peak) I did worry how he would manage with the new equipment but he rang on day two very proud of himself as he had insert his own needle. He came home at end of week able to do needle and draw up syringe etc which i thought was well impressive at 8 yrs! Sean did use a bumbag to carry the driver in but after a few weeks he decided this wasnt 'cool' and ever since he has just carried it in trouser pocket. Obviously being a 10yr old boy the syringe driver takes a few knocks and I think we are now on our 5th replacement in 2 years but kids have to be kids. He still has some very difficult to manage hospitl admissions but day to day he is able to do far more sport than before S/C. IHe manages to disconnect it for rugby on a sunday morning, he takes 10 puffs of ventolin before play, 10 puffs at half time and 10 when he comes off pitch. Fortunatly its only 10 mins each way and somehow he can play with pf of 150 but I wouldnt reccomend that to everyone ! If we dont put the s/c straight back in his peak flow drops by 50% within 12 hours so it obviously is doing a ok job . Sean says he feels loads better when its running and as far as his breathing goes he knows best.

    Every child is different but for Sean it was a good choice to begin S/c and it very quickly has just become part of him, kids at school accept he needs it and the school have been very keen to accomodate his medical needs.

    I was told by a con at RBH that if it is going to be effective its usually a rapid response with miniml side effects so i figured we had nothing to lose by trying it.

    Good luck in whatever decisionyou make

    Julie x

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