Thank you to everybody who has responded to my message yesterday, I very much appreciate that.
to answer some questions, my daughter was diagnosed with diabetes at the age of eight, insulin dependent, using levemir twice a day and novorapid for meals and correction doses. between eight and around thirteen years of age I was able to do all the monitoring/injections etc but when she reached thirteen she rebelled against her diabetes and would not let me do this any longer, she refused to let me come into school and do the necessary things for her (which I had been doing) the school were unable to monitor her, she just wanted to fit in and be like the other pupils and simply did not inject, and ate lots of sweets, fizzy drinks like her school colleagues,she tells me she only injected her levemir at bed time, she has had numerous admissions over the years between thirteen and eighteen due to ketoacidosis but still did not do what was necessary to look after herself, it was on the last admission to hospital with ketoacidosis in January 2012 that she woke and said she could not feel her feet, this was the sudden onset of peripheral neuropathy which has very rapidly got worse since then. at that point there was no damage to the eyes that we were aware of, she went every year for her diabetic eye screening I took her myself with no rebellion there from her. so the damage to her eyes has been very rapid and to use the eye surgeons word 'explosive'.
Yes, we do have a lovely GP who is very supportive and has referred us to specialist people but there is such a long waiting list apparently and it all takes time before we actually get to see anybody, we are in the Brighton area so I presume the waiting it is as its a heavily populated area?
My daughters appetite is affected due to the gastroparesis, she eats little amounts, she loves fruit, has an oat porridge at breakfast (oats affect some coeliacs but she does not get affected by oats, her weight has increased over the last 18 months from 8 stone to nearly 15 stone, this troubles her immensely, she is unable to get enough exersice due to the severe neuropathy and foot ulcers so is in the wheel chair a lot of the time, the gp thinks the weight gain is a combination of things, certain medications she is taking, lack of excersise her self esteem is very very bad, she hates her life she says. with aspergers she is very visual, used to take photographs everywhere, getting to places by recognizing visual cues, she cannot follow verbal directions properly, losing her sight is absolutely terrifying and she says she does not want to live like this, she is on all sorts of meds, oxycontin pregabalin venlafaxine duloxetine erythmirycin quetiapine buscopan this worrys me enormously, what must all these meds be doing to her, we tried to cut down some of them recently but she was again screaming in agony on the floor and we had to put the amount back up. I just feel so powerless & helpless, last night she said she dreads waking up in the morning incase she cannot see a thing,everyday seems worse with her eye sight, and she knows she has to have this vitreoretinal surgery within the next two weeks and is petrified of that. im sorry I am rambling, I think I just need to get my feelings out in the open, I actually feel that I am losing the plot myself here right at this moment in time and appreciate that there is someone out there who will at least listen, please please if there is any youngters out there with diabetes please please do your insulin injections try to avoid eating the wrong things, just to fit in, my daughter is just twenty and has lost her quality of life at a very early age because she did not inject and ate bad things in her teenage years, now she continually says 'I wish I had listened mum' these complications can set in very quickly and when your young too, it is a myth that it only affects older people who have had diabetes for many many years.
Thank you once agin for all your responses,
