Hi - help, advice please

[Lellikelli]

I'm a parent to a child who has T1 diabetes and 10 yrs since diagnosis. My daughter is 14 years old with very poorly managed diabetes with a HB1AC level way off target and when last checked was 105, she has since come down to 70+ but still a long way off. She's at that difficult age 'I know best ...' I'm concerned about deteriorating Mental Health which is being addressed with CAMHS but re her diabetes i'm concerned she's having odd episodes her last 31-10-2019 where she was convulsing in bed and foaming at the mouth, there are suspicions that she may have overdosed on Insulin however i'm still trying to investigate this as i'm not sure, or whether it was genuine aftermath of a possible nocturnal hypo. She is reported to have had another episode Sunday just gone where she was standing up in a trance like state unaware of what she was doing and stood in her father's kitchen at the time, his believed to have checked her bsl at this time and she was reported to be 1.9 his then reported to have administered the hypo stop injection. Before this she has in 2014 and possibly 2012 had very similar episodes, she's since been ruled out for epilepsy, so I really don't know where to go from here, as I can't let this go I want answers.

From a research point of view does anyone know if there are any indicators about smoking cigarettes, or vapes and how this can impact on a child's diabetes ? Obviously i'm not condoning this and when I found out about her vaping I put it in the bin but I was curious to know if such episodes are as a result of ;-

1) poorly long term managed diabetes
2) smoking/vaping
3) overdosing on insulin

She has also lost weight over the last few months and the medical team have informed me its because of muscle wastage and was at that time in Sept 19 on blue light emergency to hospital should she present with any hyper's where ketones were a feature, however, she's NOT had any due to erratic blood sugar readings.

However, what concerns me is there is no contingency plan from the health care team, I've not felt supported by them in a long time, and I've been crying out for help in the last year, can anyone suggest where I go from here.

 

[Martin9]

Hi, I can’t help re your daughters condition as she T1, but I can very much empathise with your difficult circumstances , must be very challenging ..
I doubt her smoking, vaping would be impacting badly on her diabetes but her poor choice of diet and varying insulin dosage would certainly impact.
However there will be other T1 s comment soon with better info
Take care
Martin J.

 

[rebrascora]

Hi and welcome

I am so sorry that you are going through such a difficult time with your daughter It must be extremely worrying and frightening for you as a parent. I have only been a member here for about 9 months but I have read enough posts during that time to know that you are not alone in this respect with a teenage child. From her perspective, being a teenager is difficult enough without having to cope with diabetes on top and doubly so from a parents perspective I imagine.
The trance like state you describe is almost certainly a hypo and a reading of 1.9 confirms that so her father took the correct action. Hypos happen from time to time despite our best efforts to keep our BG (Blood Glucose) in range because there are so many factors which affect BG levels particularly hormone fluctuations during adolescence, so it is very difficult to balance it. BG levels can also affect you emotionally, which makes it difficult to make rational decisions and I know I sometimes get so frustrated with my readings being stubbornly and persistently high that eventually I give myself a bigger than usual dose of insulin (sometimes referred to as a rage bolus I believe) and then regret it later when my BG plummets. At least her hypo episode a month ago indicates that she is using her insulin even if she had given herself too much on that occasion, so that is something to be relieved about. It seems from some of the posts here from parents that there are some teenagers who refuse to use their insulin, which is a greater worry.

Is she on MDI (multiple daily injections) or a pump? Technology can help and young people are more likely to adapt to it better than us old fogies, so that may be something to explore with your daughter and your diabetes team. Knowing more about her current insulin regime might help us to make specific suggestions.

As with all teenagers, being too restrictive or disapproving can sometimes push them in the opposite direction. Whilst I can really understand your concerns about her smoking/vaping, it may be something that she grows out of and even if not, there are members here with Type 1 diabetes who vape and don't have concerns about it. We all have to make our own decisions in life and your daughter is at an age where she is experimenting with making her own decisions and some of them may be the opposite of what you would want for her. The best I can suggest is that you let her know that you love her and will be there to support her in whatever way you can.

 

[Thebearcametoo]

JDRF has a nicotine fact sheet if that helps https://jdrf.org.uk/news/how-does-smoking-affect-type-1-diabetes/ they may be able to support you as a family too if your NHS team aren’t being useful. The data on smoking may be less of a direct link than is first suggested as it may be that people with diabetes who smoke also struggle with their diabetes management rather than smoking causing higher readings but it helps to see what the data is. Teens will try things that their friends are and smoking or vaping doesn’t mean she can’t have good control it just may be another part of the picture of her struggling with managing her life at the moment.


I don’t know where in the country you are but if the diabetes team is big enough then you can request to see a different doctor or nurse if you don’t get on with your assigned one and don’t feel supported by them. I would expect them to work with her to see how to improve her management. If she is having such low hypos that she’s fitting then she should fit criteria for a libre or similar monitor which would help give a good record of her numbers which can help with tweaks to her management. Is she on MDI or a pump?

You can self refer to CAMHs. Her poor management of her diabetes could be interpreted as self harming behaviours which would mean she should be seen more quickly that if you don’t frame it in that way. There is usually an online form that you can fill in. Give as much information as you can as it helps them to triage referrals. Your GP can also support a referral but it won’t necessarily get her seen any faster.
How are school? The pastoral team there should be involved in her care and have a duty of care to her for the time she is with them. Can you meet with them to flag up the issues and see what support they can offer.