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would really appreciate any advice about my mum. i am T1 (12 yrs) and am waiting until my clinic appt early april to talk about the possibilities of using a pump (have been worried i've got some 'damage' but will bring this up at clinic). mum has been t1 for 37 years, and has been fairly 'uneducated' about it, she was just told the amount of insulin she was told to take and balanced her carbs using the old exchange method. she very rarely eats anything sweet or indeed anything outside of meal times and sticks to the old carb portions she was taught to use (unlike me).
she has always been on the large side, typical apple shape. when she attended the DAFNE equivalent course in her area she was flabbergasted to learn she could reduce carbs further and even miss meals out if she felt like it. this resulted in a drop in her insulin and she also noticeably dropped weight. probably 2 years ago now. also gave her confidence to 'correct' if BS high. she has always had much more insulin than me, round about 26 quick acting with meals, can't remember long acting but 40ish before she went on to levemir and started to split dose.
recently though, she hasn't been able to get on top of her levels, mostly in double figs. she has increased her levemir at night and is now taking 70u and 40u in the morning. still waking up with levels anything from 8-24ish. with meals she takes novorapid anything from 30-50u but is happy to correct - which she's having to do regularly and this STILL doesn't give her stable levels. her consultant just said increase but she keeps upping and still has BS levels all over the place. a 12 is good! this ain't on. consultant arranged an appt with DSN which has come thru for end of april. in the mean time, my mum has been steadily gaining weight. i noticed it in her face and tummy over the weekend (very rounded!) when i saw her. it's really starting to bother her (so it must be bad coz she is the dead opposite to me and doesn't worry about stuff!).
i keep rattling on about a pump maybe being able to help her, she is very willing to put in the work. but she was told she may be able to trial one after doing the DAFNE type course - she followed this up but no-one ever got back to her. this was 2 years ago and she has mentioned it at clinic appts but no-one is ever bothered. it's only now that she is experiencing the insulin probs and erratic levels that i think she should really be pestering them.
im a fine one to talk about chasing up, i've had terrible trouble being under the care of, er, no-one for the last 2 years. i did chase but always hit a wall with docs saying i didn't need to go to a clinic. anyway that's another story! but i know how frustrating it is to get nowhere (which seems a common thread). my mum always assumes there isn't a prob as no-one is knocking on her door but i try to tell her if she isn't shouting, no one hears.
does anyone else think that end of april is too long to wait, that's another 7 weeks of this hell, and potentially even more weight gain. i am very worried for her health (i can barely cope with my own concerns at the mo, this is pushing me to the edge!). she said she would try and get through to the DSNs at her hosp and say she was having all this trouble. i just wanted anyone's advice/experience/thoughts on this matter.
is it only me who thinks this is an unnacceptable situation, is 200+ units of insulin a day a huge amount?
forgot to say she has had all forms of metformin in the past but it really doesn't agree with her so her consultant says don't bother. (!!!!)
many thanks
she has always been on the large side, typical apple shape. when she attended the DAFNE equivalent course in her area she was flabbergasted to learn she could reduce carbs further and even miss meals out if she felt like it. this resulted in a drop in her insulin and she also noticeably dropped weight. probably 2 years ago now. also gave her confidence to 'correct' if BS high. she has always had much more insulin than me, round about 26 quick acting with meals, can't remember long acting but 40ish before she went on to levemir and started to split dose.
recently though, she hasn't been able to get on top of her levels, mostly in double figs. she has increased her levemir at night and is now taking 70u and 40u in the morning. still waking up with levels anything from 8-24ish. with meals she takes novorapid anything from 30-50u but is happy to correct - which she's having to do regularly and this STILL doesn't give her stable levels. her consultant just said increase but she keeps upping and still has BS levels all over the place. a 12 is good! this ain't on. consultant arranged an appt with DSN which has come thru for end of april. in the mean time, my mum has been steadily gaining weight. i noticed it in her face and tummy over the weekend (very rounded!) when i saw her. it's really starting to bother her (so it must be bad coz she is the dead opposite to me and doesn't worry about stuff!).
i keep rattling on about a pump maybe being able to help her, she is very willing to put in the work. but she was told she may be able to trial one after doing the DAFNE type course - she followed this up but no-one ever got back to her. this was 2 years ago and she has mentioned it at clinic appts but no-one is ever bothered. it's only now that she is experiencing the insulin probs and erratic levels that i think she should really be pestering them.
im a fine one to talk about chasing up, i've had terrible trouble being under the care of, er, no-one for the last 2 years. i did chase but always hit a wall with docs saying i didn't need to go to a clinic. anyway that's another story! but i know how frustrating it is to get nowhere (which seems a common thread). my mum always assumes there isn't a prob as no-one is knocking on her door but i try to tell her if she isn't shouting, no one hears.
does anyone else think that end of april is too long to wait, that's another 7 weeks of this hell, and potentially even more weight gain. i am very worried for her health (i can barely cope with my own concerns at the mo, this is pushing me to the edge!). she said she would try and get through to the DSNs at her hosp and say she was having all this trouble. i just wanted anyone's advice/experience/thoughts on this matter.
is it only me who thinks this is an unnacceptable situation, is 200+ units of insulin a day a huge amount?
forgot to say she has had all forms of metformin in the past but it really doesn't agree with her so her consultant says don't bother. (!!!!)
many thanks