Published on 12, July, 2020
Hi all
I am wondering if anyone here is diabetic? My son was diagnosed in August last year, three weeks after turning 19. He is maintaining good control of his glucose levels, mainly through refusing to eat breakfast and being extremely insulin sensitive.
We found out yesterday at an information day that a closed loop system would really help him with his insulin sensitivity (half a unit Novorapid correction took him from 14.5 to 4.8mmol) and his constant CGM alarms and sleepless nights. He doesn't feel lows coming on, and he is getting hyper fixated on avoiding highs, to the point he doesn't eat breakfast anymore and has lost a lot of weight.
Today I found out that he is on the "young adult" services but they technically see him as an adult as he is over 18. I would strongly argue that he is a lot younger emotionally, and they should treat him as such, but it is gathering resources to show medical people to see him as an autistic person rather than ignoring that. He is absorbing information about it really quickly but he is processing it in a sort of messed up way, like not eating any more. A pump would allow him to be given tiny corrections and not have constant low alarms. And he would be able to eat without the fear of going above 10.
I need them to see him for who he actually is, and how his obsessiveness is starting to hurt him here, before it is too late.
Does anyone have any resources or information that would help? Does he have any rights as an autistic patient?
His greatest fear is being seen as autistic and as different and standing out, and he is going to hate having to talk about this and he will be angry that I will say things about how he is coping (or how I am coping for him) but I swear to God once this new battle is over I will never bring it up again!!!
Thanks in advance, love to all
Emma
I was diagnosed at 16 (a long time ago now!) and put straight onto the adults ward. I knew I was "young" for my age and really would have benefitted from being treated as a child. When was your son diagnosed?
I was told about all the awful things that could happen to me if I didn't control my blood sugars properly, and sent away with an insulin pen and instructions to aim to keep my levels between 4 and 8. It took a year to find a dose that worked for me. It was a combination of being scared by the doctors when they told me about complications and my black and white thinking that made me become obsessed with what I ate and how high my levels were. I would restrict my eating and over exercise to bring my levels down. Nobody bothered to tell me that going high was normal, even a non-diabetic has higher blood sugars after eating. Now that I have a pump and a diabetes team who have explained to me what I should REALISTICALLY be aiming for, what most diabetics blood sugars are like and that I am actually doing well despite my levels rising to 15ish after meals, I am finally less stressed. I am wondering if some black and white thinking and scare tactics have affected your son?
If he is not eating breakfast, do you know why? Is he afraid of high sugar levels? Most breakfast options are high in sugar and carbs which cause spikes in sugar levels and can make some diabetics feel unwell (the sudden rise and drop of sugar levels feels horrible). Might he be open to eating a low carb breakfast like scrambled eggs or an omelette? In general I would suggest he try to eat more protein and fats to increase his weight because these will not affect his sugar levels as much. In the meantime, get in touch with his diabetes consultant, there are some eating disorders that are specific to people with diabetes and there should be psychological support available to help with this.
How does your son feel about having a closed loop system? It sounds like a really good idea.
As for his rights as an autistic person, I don't really know (i was only diagnosed last year), you would be best to speak to PALS (patient access and liason service) or your equivalent in NI for advice on this.
I hope this helps a little. Feel free to ask me any questions.