I hate T1 diabetes ☹️

[Snufflebabe05]

My 7 year old DS was diagnosed in August last year. It was out of the blue, and because of lockdown, we’ve had really limited support since. T1 diabetes is a rollercoaster you can never get off. We try so hard to keep life as normal for DS, but it’s a exhausting. We can’t just pop out to the shop for milk, we need a full medical prep bag. Every single meal and snack needs to be weighed and carbs counted so that insulin can be measured out. Tonight we’ve had takeaway pizza and we’ve had to split the dose of insulin as we are learning how his body processes it all, and his current blood glucose is still too low to give the second set of insulin. So lll have to wait until he starts to creep up, give him more insulin, then set another alarm to check his glucose. It’s exhausting. Our families have taken a real step back from wanting to help. They won’t even take our DS and his sibling to the park. I know T1 is a lot to learn but it hurts that they have just stepped away rather than getting stuck in and want to support us. My OH and I have Barney had a moments respite since March last year. There aren’t any T1 support groups running because of Covid. I’m just finding it all a bit much at the moment. Anyone else?

Sending my sympathies - I'm a 35 yo Type 1 (diagnosed at 18) and find it crap enough managing my own diabetes. I cannot imagine how hard it is to try and control your child's. The sheer responsibility of every decision you make must be so overwhelming. Does he have a Libre? Is he on a pump or injections?

Hi ThePug, he has a Libre and is on injections. Waiting list for the pump is around 12/18months. I just wish for a break from it every now and then. He’s still so little that we need to manage the insulin, ratios and carb counting. He does his own finger pricks. No one really knows the volume of work that goes into keeping him healthy. It’s exactly as you describe - the weight of getting this right, when the rules are so vague - feels too much sometimes.

It will get easier, keep pushing for support from your team. As time goes by you will get to know more and more carb values so less calculations. The pump will make a massive difference to. You can give much much smaller doses of insulin so the more of a constant and depending on the pump, can link to cgm so the pump does more of the thinking for you. Plus as your son gets older he will take more ownership.

6yr old ds was diagnosed when he was 4.
Agree it’s totally shit. There’s a good group on Facebook called ‘diabetic mums uk (mums with t1 kids)'
It’s a busy group always a quick reply to questions and someone to hear you rant.

Hi, I'm mum to a type 1 teen. I'd highly recommend joining some Facebook support groups, even if you're not a Facebook fan. UK CWD AG (UK children with Diabetes Advocacy Group)is a particularly good one. My son was diagnosed 10 years ago and I've learnt so much from these groups, anytime i have a question or concern there's always someone there to help. Generally children's diabetes teams can be very supportive but it's difficult at the moment with few face to face appointments.

I hope this helps in terms of being a bit more spontaneous for activities etc if that’s what you want I would say have a handy ‘trip to the park’ pouch. I did all sort of sports as a kid and still do some now in my 30s. I have a pouch pack I suppose that has a number of sports gels eg the high5 or SiS ones, testing kit and insulin pen in it. It’s easy to throw in a bag or at a push a large pocket such as in combat trousers or running/cycling belt. I’ve not yet found a situation this won’t get you out of most trouble with especially if locally or anywhere where there is a shop/cafe and means you don’t have to pack a load of things each time, if you use anything put it back when you get home and then the case is ready to go if a kickabout in the park gets suggested.

It’s pretty unpredictable as a condition even if you think you do everything right your hormones can just mess with it so please don’t be too hard on yourself if some days your ratios end up different etc and you need the odd correction.

My OH is T1. I cannot imagine what it muat be like to manage your child diabetes. It must be terrifying. Our lives improved dramatically when he got a pump and more recently an omnipod, although the constant beeping is a PITA. The libre was a real gamechanger. He was diagnosed at 21 and now mid 30s. Pre lockdown we travelled, he travels internationally with work. Some things we have to take a bit slower than other people to allow for snacking, hypos, etc but we try not to let it hold us back. It does get easier in terms of being prepared when you go out, etc but I have no doubt it overwhelming at the beginning. I can empathise in some ways as my oldest is anaphylactic to some foods and my anxiety was sky high when shortly after we started weaning we ended up in an ambulance to paed A&E xx

Would online courses like this one help?

www.bertieonline.org.uk/admLogin.asp

When it comes to meals, you shouldn't need to weigh everything. We were taught to use volume when we did the training (eg a portion of pasta the size of your fist). Weigh it the first time and then you can estimate by eye after that. Saves a lot of time and faffing with scales!

I am type 1 and trust me it gets easier, I always found that once you get to know how much insulin for certain meals it gets much easier. I found carb counting a pain but there are a few apps which make it a bit easier. I remember my mum pulling her hair out when I was diagnosed so completely feel for you, there never has been enough support but feel free to ask anything

As @lampygirl said there are days where his levels are spot on and other days when he seems to have done everything 'right' but a stressful work project or bad nights sleep affects everything. Weve found it easier to stay away from Chinese takeaways, for example, as the outcome is never great and so I make our own. We generally follow high fat, low carb although appreciate this is tricky for kids.

T1 diabetes is a horrible, horrible disease. OH was diagnosed 10 years ago in his early 50s and is only really getting used to it - if you ever do. I hope things will ge a little easier for your little one as he grows older, gets used to it and is able to manage his finger pricks and injections.

DH has T1 and he estimates like @lurklemurkle. He also pops to the shops with pen and dextrose tablets which is not a huge deal.
But I agree it is total pants.
I'm currently trying to get DH to see a psychologist (many diabetes teams have one) as he's getting really down about it lately.

It is total shit, you have my sympathies but it does get easier. My DC is now on a pump and it has literally been a game changer.
Download the carbs abs Cals app, you find most things in there and you do get used to estimating.
I don't think other people get how serious it is. I've had comments like "oh I couldn't inject my child" "is that the bad type" "is it because they are too many sweets"
Even medical professionals don't understand it, when my DC went to get their flu jab the nurse asks if they were ok with needles!
I'd def second joining your local FB group. I don't really participate but it is great for info cause you can be sure if your worrying about something someone else has worried about it too.

I completely get friends and family stepping back. Both sets of grandparents refuse to learn anything, even basic hypo treatments, there's a flow chart ffs. I'm selfishly gutted schools are shut as apart from me and dh the TA is the only person who can look after him.

It's a big responsibility and I completely get how not many people want to risk making a mistake. DD has a type 1 friend, whenever she came round after school for dinner it was really stressful making sure I told her the right amount of carbs. I would weigh everything twice. And apart from one other girl no one else from their primary school gang ever invited her over. We will no doubt be left out of playdates too when they start up again.

DH tells people "no it's not because I ate too much cake".

Thanks for all your comments. I’m on a few FB groups but the local one for parents is pretty quiet.

@Pippapotomus I absolutely hear you about missing school. Like you, our TA is the only other person we can leave him with. She’s beeen incredible.

On the family part, I wish they would even just take the kids to the park, between meals. So no insulin required. DS can handle his own hypo treatment (as can his big sister who knows the process). They played a pretty big role in their lives pre-diagnosis - going there after school, sleepovers at weekend. But both sets have just stepped back. I appreciate it’s a lot to learn, and it’s really only when you are living it that you do learn, but its hurtful.

We’ve yet to experience play dates etc becuase of covid. Most days after school there’s a club on or it’s after school club, so we usually tend to do a park trip instead. But I do worry about him not being invited to things because of his T1. 😭

Sounds really tough. I'm not diabetic so can't help, but just wanted to say that in school (I teach secondary) pupils with diabetes always amaze me at how well they seem to manage. Popping out to test, asking to eat something in class etc. they all seem amazingly together, I'm quite in.awe, they manage it well. The first few years must be a nightmare especially with covid, but in my very limited experience kids manage well, so it won't be like this forever.

I hope you find help in the various recommended groups.

Op it will get easier my daughter was diagnosed when she was 8 its surprising how young people become adapt at managing it She is now in her 30s and it has never stopped her doing anything and her life has been as normal as her friends.
It amazes me even now that she has a good idea where her blood levels are without even testing
And you can pop to the shop without a medic kit
All the weighing and counting carbs wasnt really a thing when she was first diagnosed but she herself became good at getting the balance right

I’m actually a TA who looks after a little girl with T1 who is the same age as your son. She was diagnosed when she was 3. It’s made me very proud to hear that you think your TA is amazing so thank you for appreciating her so much. The little girl I look after doesn’t come from the U.K. and her mum has said that in her home country she wouldn’t even be allowed to go to school unless she came in several times a day to do her bloods/insulin etc. I look after like she was my own child and worry about her in exactly the same way.

Sorry to hear you are finding it hard OP I have heard of people buying their own pump, I know it's very expensive but they were in a fortunate position to afford it and it made life so much easier for them.

Whereabouts do you live? Some teams are able to get you on a pump sooner. Would you consider changing hospitals? The nurses then can't come in to school to train so depends how you feel about that.

My daughter was diagnosed at 3 - she's 16 now. Lots of sympathy from me. It's shit!