Anyone with a type 1 diabetic child / teen.

[Foodtheif]

We’ve been diagnosed around two months now and I’m still so upset about it. Normally could cry at any point within seconds. So worried for her future and how she will cope in her teens. Even though she seems ok with it at the moment and has accepted it, I feel I’m doing worse than she is. I’m also petrified that my older daughter will get it too.

Agree with everyone else. Type one for twenty years. My mum is also type one and dd(8) has signed up for the trialnet study as there are genetic components.

Push for a pump and freestyle libre (I don't think there's many trust that prescribe CGM) they're a game changer. Join all the Facebook groups (I think there's one called mums of type ones or something). It's come such a long way since I was diagnosed (two injections a day and no such thing as carb counting!). It really does become second nature.

Yes I’ve looked into some of the research and found a new tablet for type 1 that has some sort of coating that makes it possible to be taken orally. Think it’s only one a day too. Fingers crossed it works out and in a few years time it’s available for all. Would be fantastic. Yes I do feel sad for her carefree childhood and teens. I doubt she’ll be invited to may parties now that they are all starting to be without parents staying and play dates are not going to happen anymore. Sleepovers are definitely out of the question which will absolutely devastate her when she realised. 😢

I understand it's early days right now but give it some time and there's no reason she can't go to parties/play dates and even sleepovers eventually.

Why would play dates and sleepovers not happen? Once she's older she can learn to monitor her own diet and glucose control.

Best speak to your provider about the pump. I was taught that they like a person to be on multiple daily injections for at least a year before they go to a pump, but that could have changed. I also LOVE the CGM technology. I think it could really be a game changer for diabetics - better control.

I think it depends on the consultant and area. One child in dds class went onto a pump almost immediately but a little girl at one of the schools I visit is on injection therapy.

Hi my son was diagnosed as type one 12 months ago age 2. His dad is type one as is his sister.
It's hard! I worry for my younger son too, but it is what it is . You find an inner strength and carry on.
We have dexcom G6 waiting to be delivered so excited for that.
The Facebook group is brilliant for support and I've learnt so much from there.

My DP never lets his T1D stop him and we will bring up our child up the same. It just takes a little extra planning with type one in the mix.

It's rather unlikely that your other daughter would develop T1DM. It's not genetic.

That’s interesting. I was led to believe that, to a certain extent, it is genetic or at least the pre disposition to an auto immune condition is hereditary.

My DH’s mum has Addison’s disease (an endocrine disease like T1DM) and my husband has been told that he’s more likely to develop an autoimmune condition such as diabetes type 1, pernicious anemia or thyroid problems.

The endocrinologist has also said that we should make our children aware as they get older that there is a pre disposition to auto immune conditions.

I also was friend with a girl at school whose dad had T1DM. She had three sisters and three out of the four daughters had type 1 diabetes.

My DS does sleepovers. After dx unfortunately he stopped being invited places but has recently changed schools and now has a raging social life. This is going to sound terrible but you are going to feel like you want to explain to people how serious this is (because they won’t understand). My advice would be to be selective in who you confide in about the difficulties. Find a group on FB and let it out on there with people who do get it.

Also, if in time you decide that the pump is the right route and your clinic are stalling, you have the right to change hospitals.

I can’t see her ever injecting herself. She has done the finger pricking herself and sets the needle up but then she gets anxious and cries that she doesn’t want the injection then chooses an injection site and then changes her mind. Repeats that about 5 times. Meanwhile her carefully carb counted dinner (and mine) has gone cold. I think she’s always going to be known as the girl who’s mum is always hanging around - like at brownies. I now need to stay and go to every activity they do. I think the invitations will disappear and she’s such a social girl she will be so sad. Thanks to whoever said not to tell people too much as I think that’s probably a good idea. Some people annoy me (but please me too) by my saying she’ll be fine etc. Face to face when they say that I think they don’t know what they are talking about. Then others annoy me when they take it seriously and I then think - well it’s not that bad. People can’t win with me at the moment. Unless they have direct experience with it.

A pump might really help then. She would need a set change ever 2-3 days but would give greater flexibility with eating.
It is serious and it is life changing. It’s hard work and unless you live with it 24/7 then you don’t get. The dsns don’t often get it. The consultants don’t often get it.
I don’t think there will be a cure but I am hopeful technology will improve.
Take a look at the Medtronic 670 if you get a chance - it’s a closed loop system where the basal adjusts up and down automatically to keep you within a set range.

Sleep overs arent out. I had dd1s friend with t1 for a sleep over about a year after she was diagnosed (and using a pump). Good planning with her mum and lots of phone contact. Its very doable.

I didn't want to read and run, I was exactly where you were a couple of years ago, DS1 was 7 when he was diagnosed and is now 9. He was petrified of needles upon diagnoses and sounds very similar to
How your daughter is now, he was diagnosed in the October and by the March/April he was injecting himself so you will find this will get easier. 2 weeks is still very early on and I think tbh the worst point as it kind of hits home how much it will effect day to day life, the information overload etc.Play dates are still doable, I accept at the beginning it was easier to host them myself, but found parents at the school have been super supportive, once he could inject himself it was much easier as I could give a meal or parents could carb count (I found an oven pizza to be an easy solution), I would test him at school (as I was there anyway with siblings) and determine wether to have a snack before he left, he would then test and insulin before dinner a couple of hours later and then I would test him again when I picked him up. Parties I tagged along at the start again but now he's okay to go alone, it's amazing if you involve them how quickly they pick up everything - he can measure and weigh his breakfast, work out the insulin, knows when he should and shouldn't eat and the best way to handle himself (mainly through trial and error but over time you learn what works and what doesn't).

So far it hasn't stopped him doing anything, perhaps me and his dad are there more than other parents - always get first dibs on the school trips etc but he still does football tournaments with school, if we can't be there the school work something out and all the staff are trained (office, teachers and TA's) as he's getting old it's easier.

I would like to say there's no chance of a sibling getting it but unfortunately for us his younger brother was diagnosed 6 months after him at age 5, again he has been okay, I think seeing his brother deal with it helped him and he did injections almost straight away, they are both quite different in how good effects them but all the snacks and carb counting isn't much worse for 1 than 2. We didn't do trial net just kept an eye out for signs (he was drinking loads so we used his brothers blood tester) we also
Have a little girl and occasionally test her but so far so good.

Our middle son started a pump recently - it has been amazing tbh and wish we had done it sooner, much better control, no time limits/ less of a routine needed with the food and obviously no injections. Our eldest is still on injections but has now changed his mind so we are waiting for funding to go through to start him on one in the next couple of months hopefully.

There is a great Facebook page

m.facebook.com/ParentsOfChildrenWithT1Diabetes/

Which I found invaluable in the first stages, we also tried to make it fun for the boys with smiggle case for their equipment and a nice backpack that they got to choose.

You will also be entitled to DLA - you cannot claim until 3 months after diagnosis/ first symptoms - the form is quite long but the extra money means we can treat the boys to extra bits they wouldn't normally have and also helped for all the extra snacks and foods they need as I found our food shopping went up by quite a bit!

Any questions please ask as always happy to talk, our hospital also did a Christmas type party and that was a really nice event to meet local parents who were in the same situation and we see a couple regularly!

We are in Surrey if that's nowhere near you!

Anywhere near you that was meant to say*

I would recommend the cwd (children with diabetes) Facebook group. It’s very active and most there are in the UK. They do meet ups and are very helpful.

My DSS was diagnosed at 14, he's now 28. It hasn't stopped him from doing anything.

He's got management down to a fine art, adjusts his insulin according to what he's about to eat and discreetly pops to the lav to use his pen-type injector He drinks, parties, stays up late, travels and seems in the rudest of health. He's never had a hypo.

He does a very physical job, too, he's a tree surgeon. He manages a fair-sized wood and stays overnight there sometimes. He's incredibly fit.

The only diabetes-related problem he's ever had was an abscess on his back when he was first at uni.

I have a 14 year old who was diagnosed 4 years ago and it was a horrible shock. However as with most things it gets easier over time. We use the freestyle libre and would really recommend it.

My other children participate in the trialnet studies and unfortunately we now know that one of them will develop type one as he has tested positive for auto antibodies and had two glucose tolerance tests which showed his pancreas was already slightly abnormal. There definitely is a genetic component and I was surprised to read up thread a nurse said there wasn't!!

It will get easier and we have always taken the view that my child's diabetes is a very small part of them and in now way a defining characteristic. I also remain hopeful that there will be a cure or a much easier way of managing it in the next few years.

Lakie - how on earth can a type one never have had a hypo? Or do you mean never a really bad one?

Genetically - some families it seems to appear once and never again and some families it appears over and over.
There are different types of t1 diabetes they think now - treatment and presentation is pretty much the same for all except MODY but personally I believe that some of these types are more strongly genetic than others.

My friend is one of 6. Her sister has it but no one else. No parents, grandparents, aunts, uncles, nieces, nephews. There are loads of them, they are a huge family and no one else has t1 or any other autoimmune condition.

Someone else I know has t1, so does their brother, so does their sister, so does their dad and their grandfather did too. In that family it is clearly heavily genetic.

It must be very upsetting to receive this diagnosis, but I hope you were reassured that is it not possible to "get" type 1.
I have 1 one friend who was diagnosed aged 8, after she had had measles and chickenpox at the same time. It did not stop her doing whatever she wanted to, including university, marriage and a child.
It may take a bit of trial and error to gain control of the situation, but, once you have, the sky is the limit.
Good luck!

We were told it is like a perfect storm. You have a genetic predisposition and then something happens to trigger it, eg a virus period of extreme stress etc.

The first thing I would like to say is please slack off all the information overload. Lots of people on here have advice to give and your head will spin. My daughter was diagnosed at 8 and is now approaching 40 and has three lovely children.
You just for now need to stop and take stock. You will take time to get over the shock of your child having diabetes. Gradually gradually let yourself grieve because grieve you must, for the child without health issues that you had. I immediately lept to child bearing problems.
Firstly. take up the support, Diabetes UK were a lifesaver, esp the holidays. Dont expect anyone to understand. They wont. They will minimise the issues. I will tell you that it is indeed a rocky road and there will be time when it is hard. But you will get through. For now, let yourself be sad, deal with the day to day issues because that is quite enough. Gradually she will become more and more self sufficient, yes she will have sleep overs, yes she will get it wrong sometimes, she might rebel a bit and get drunk, she has to find her own way. My daughters childbearing was the nightmare I dreaded, but she has ended up with 3 wonderful and healthy children. Diabetes is part of who she is but it doesnt define her. Your aim is to not overprotect and let her grow

It doesn’t stop you (and I hope you don’t mind me saying this) but it requires more work to do things that other people can just do without worrying about it.
In some ways it’s reassuring to say it doesn’t stop you but that kind of sometimes feels like it undermines the work it takes to not let it stop you. I know that’s not how people mean it but it complicates things.
My friend gets up when he wants, goes for a run or a bike ride, then he will go for a big pub lunch. A normal day.
If I get up late I have to decide whether or not to lower my pump basals by checking my bloods at the time I usually get up - as that is when my basal rates rise and I usually go hypo if I sleep longer than usual. If I then want to do exercise I have to check my sugars, eat something if too low and but a temporary basal in or correct if too high. I’d then have to recheck during the exercise. After if I went for a meal I’d have to weigh up the affect of the exercise and decide whether or not to have a reduced bolus or possibly an increased bolus if I’ve had temporary lower basals in to stop a hypo when exercising which can then cause a high later on. Yes I can do it but it requires a heap more effort.

Don’t underestimate that burden - for that is what it is - and give you and your daughter plenty of down time and make some allowances. Also remember that it will never be ‘stable’ - that’s the nature of the beast - and so you are not in any way failing if you are having a tough day. It does become second nature but that doesn’t make it any less important.

My DD (9) was diagnosed last June. To be honest, it was a relief to know what was going on as I'd thought I was losing my marbles. Her mood & behaviour had been getting worse and worse before the weeing / drinking / eating HUGE amounts kicked in. Yes, it's a bit of a shock but better than not knowing. I was so worried about her. She has only just (in the last two weeks) started injecting after I found a suitable incentive (agreed with her!).

The sleepovers were off for a little while, then I would go over and inject in the evening & morning, and last weekend she had the first one without me - at a friend's house where the mum is a very good carb counter! So there is no reason why your dd should miss out! As for parties - she will learn to be careful, and you can always adjust afterwards if you need to. Kids are amazing with their capacity to learn.

We are self-funding a libre and it is absolutely amazing with readings every 5 mins. So much easier than finger-pricking.

I am sad that it many of the things I enjoyed so much (travelling, drinking ) will be more difficult for her, but there is nothing they can't do ... with a bit of planning!

I now find it quite galling that cafes & so on frequently cater for lifestyle choice diets but no low carbohydrate offering whatsoever.

Oh yes - and we got a puppy ... Highly recommended!

Feel free to PM me

My 16 year old son was diagnosed at 12. I was just like you. It took me about 18 months to stop feeling so lost and sad, I was crying a lot! Like a previous poster said, grieving probably, meanwhile he coped like a trouper! Our team are amazing and we’ve recently just got the dex com 6 CGM which is just a game changer. There’s a few groups on Facebook with some really experienced parents and I have found their advice and support of each other really helpful. Our next hurdle is Uni but since we got the dex com I feel less panicky about it. Stay strong, look after yourself and talk and get support for yourself. Our kids are amazing and I’ve found inspiration from my brilliant son. He has a younger sister and like you I worry she may develop it but I know we can do it if it happens. He’s taught us so much about just cracking on with life! Lots of love to you and yours.