Loosing equipment

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Robertson88

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My daughter is 12 and was diagnosed in January. She's taken to it brilliantly but recently I'm really struggling to get her to keep her things organised. I've bought special bags, drawers baskets and she still looses important bits daily. Ketone monitor has suddenly vanished tonight when we needed it (thankfully her sugars have come down) she left her omnipod at home after going to school, keeps forgetting hypo treatments or doesn't bolus food when out with friends. I feel like I'm constantly at her for little things but they aren't just little things if she becomes seriously unwell.
Not sure what advice anyone can give think I just needed to rant more than anything. I can't imagine what she is going through and I think some days she just wants to forget it all ignore it and be normal again.
 
You say “recently” - do you think she’s losing things on purpose? There’s a stage after diagnosis when you suddenly realise the Type 1 isn’t going away and that can cause anger and upset. Have you talked to her about her ‘losing’ things? She might be struggling to articulate her feelings.
 
Does her hospital team have a psychologist she can talk to? That might help if so. If not, is there a family member she’d talk to, like an Aunt or a godparent? Do you think she perceives you as ‘fussing over her’? I remember when I was first diagnosed, I was extremely touchy about questions, expressions of concern - anything really.
 
I can't begin to imagine how challenging and scary it must be to be a parent of a child or adult with diabetes. Far harder than being the person with diabetes I think. I wonder if your child is going through a phase where she is starting to realise that this is forever rather than just an illness that she will eventually get over and perhaps her losing things is a little rebellion or push back at it, maybe not consciously, but more a sort of rejection of the idea of it being a permanent condition that she has to acknowledge all the time. I think other parents have experienced similar issues where their child seemed to cope incredibly well at first but then became less compliant or less rigorous about following the regime that they had previously managed OK.

Hopefully some parents will be along soon to advise on ways that they managed such situations, but I believe it is quite common to hit these sort of setbacks.

I sometimes see my diabetes as being a bit like one of those Tamagotchi pet things that were all the rage in the 90s or whenever, where you had an electronic pet that you had to feed and look after. My Libre is sort of a representation of that and if I give it the insulin and glucose it needs at the right times to get me a good score. Some people see their diabetes as an irritating friend that needs attention. If they look after that friend, they are much nicer than if they don't look after them, when they turn into a spiteful enemy, that causes you far more aggravation and mayhem. You learn that it is better to keep them happy than to ignore them and face the consequences.

Thankfully diabetes is mostly reasonably slow moving and forgiving and whilst the modern tech is great and really reduces the risks of having a crisis, we could still fall back on the old fashioned methods and survive at least short term.

It might be useful to have a pot of Ketostix at home as a standby for testing ketones in case this situation arises again or you find that your blood ketone strips are out of date or whatever. I certainly have both and I am not prone to losing things.

It maybe necessary to plan for things in the same way as you do to go on holiday, so that you always have a backup kit in case you run out of something or lose something or a bit of kit breaks. Hope you feel a little better from just letting off a bit of steam. Diabetes is incredibly frustrating as well as scary at times and overwhelming and wearying an only others who face the same challenges can really understand how much "band width" it takes up in your head, so one of the functions of the forum is to vent here when you need to. Sending (((HUGS))) because it really isn't easy being a parent or a child with diabetes.
 
hi @Robertson88
my suggestion for something to try is there’s an app called Gluroo that I thought might possibly help, it’s primarily designed so both you and your daughter can see how she’s managing things, and a bit more fun than regular diabetic apps, like the one the CGM connects to

It has alerts and reminders (from within the app) that can be set to remind to dose take meds etc.. it even has a camera function to assess the food,which analysed the meal and a message facility
you can create a GLUCrew where if wanted several people can message each other I believe to jointly manage the essentials
It might be worth you looking into it, I don’t need all its functionality or features myself
but found it when I wanted an app that would show my BG scores
on the locked screen of my phone rather than opening the CGM app on my phone
It also can connect to the android auto screen in the car (although I haven’t got that working yet)
just thought it might help
another thought is type one style do various graphic stickers that can jaz up the essential equipment readers pens etc as well as the sensor covers
Hope you find a solution
 
Sorry to hear about your daughter’s diagnosis @Robertson88

Wanting to be ‘normal’ and to fit in with friends, and do what they do, can be a powerful feeling at different times of life, especially during teenage years. Dosing in front of peers might feel more difficult than it would actually be. hopefully she has supportive friends, and key members of the group could become an ally for her, supporting her self management and help her not to be self-conscious about it.

Does she misplace other things often? Some people are more prone to losing / forgetting things. One of the tricky things about living with T1 is all the extra stuff and gubbins you need to remember. There’s a Breakthrough T1D ad running at the moment which has a poignant moment where a guy can just leave the house without all his kit.

Having positive conversations around diabetes can be tricky, and it’s not at all unusual for the topic to be very emotionally charged.

There’s a PDF here with some hints and tips you might find interesting

Diabetes etiquette for parents
 
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Robertson88 said:
My daughter is 12 and was diagnosed in January. She's taken to it brilliantly but recently I'm really struggling to get her to keep her things organised. I've bought special bags, drawers baskets and she still looses important bits daily. Ketone monitor has suddenly vanished tonight when we needed it (thankfully her sugars have come down) she left her omnipod at home after going to school, keeps forgetting hypo treatments or doesn't bolus food when out with friends. I feel like I'm constantly at her for little things but they aren't just little things if she becomes seriously unwell.
Not sure what advice anyone can give think I just needed to rant more than anything. I can't imagine what she is going through and I think some days she just wants to forget it all ignore it and be normal again.
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Hello @Robertson88

I'm sorry to hear about your daughter's diagnosis- it's never easy for someone at that age to adapt to diabetes. I was diagnosed at the age of 4, and my dad was super strict about everything. I just wanted to reassure you, (as you seem to be worried about being "at her" for somethings) that when I was young I didn't understand why my dad was so inflexible and I got upset about not having a life like other kids, but as I got older I started to appreciate how hard it was for my parents to also adapt, and I'm grateful to my dad for how much he helped me. My blood sugars would have been through the roof if it wasn't for his consistency.

It sounds like your daughter's control is much better than me at her age, but the situation sounds a little similar to how I would skip bolus injections a lot at lunch because I didn't want my life to be different to those around me. Giving myself my injection was a reminder that I'm not the same as my friend who can eat 5 bowls of pasta and not feel anything, and I really hated that. I really wish someone had given me the space at that age to talk about these feelings and vent how angry I felt that my life was not how I wanted it to be. At that age, I'm sure you know, it's so hard to understand and it feels so unfair. I'm not sure if you're daughter is just forgetting, but if she's not doing her bolus for the same reason as me, trying to talk to her about how she's coping with the diagnosis openly would be a great place to start 🙂

I think the most important thing is just try not to get frustrated (which is always a lot easier said than done, I know). This is a tough time for both of you, and it will have a lot of ups and downs and learning curves, but you'll get there in the end. It sounds like you're doing a fantastic job of supporting her so far 🙂
 
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Hi @Robertson88
I’m sorry to hear about your daughter’s diagnosis and the forgetting/losing vital bits of kit. It is a lot to deal with.

I was diagnosed age 12 but 47 years back and started off accepting and doing what I needed to do but as the reality set in that diabetes was not going away I got really angry, dismissive of it and wouldn’t talk about it or how I felt. There was hardly any kit to loose back in the 70’s but the diagnosis had a big impact on me just at the time I was heading into teenage years and wanted to fit in.

It may be the reality of T1 not going away is hitting home and she’s trying to take some control back over things she can change. Unfortunately with T1 forgetting insulin deliberately or accidentally isn’t good but it was something I chose to do to make my point. It didn’t improve anything but was my protest at my diagnosis.

As a small practical help could she choose a kit bag with appropriate wording on it for her stuff, there’s a lot out there eg Etsy etc some of the words might not be age appropriate although may sum up her feelings towards diabetes !

It is so tough when you want up keep her safe & well, Life with diabetes is a roller coaster and there will be ups and downs. I’d keep gently reminding her and sorting out the bits you can & acknowledge what a change it is for you all.

Wishing you well.
 
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