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.

My 9 year old grandson is type one diabetic and he goes to parties and play dates (even if sometimes he has to take packed lunch) not injecting himself yet but can do his blood test and get his jab ready. Sometimes think being diagnosed young, he was just 5, will be easier because he’ll be used to it.

We are just a few months ahead of you. This is my T1 dd(9) today NOT letting the diabetes get in the way of what she wants to do. Tested her blood on the beach - 4.7 - so ate a muesli bar before heading into the waves. Obviously not in the UK These T1 kids do have to make changes, but kids are information sponges and dd remembers the numbers when I have to look them up. Dd had a sleepover last night and is at a friend's for the afternoon, armed with her testing kit & insulin. It's possible, even if it feels insurmountable at the moment. Dealing with this is almost harder for the parents, and it is definitely team work. The kids can't do it by themselves. Takes a while to get into it but it will get easier! Good luck.

Thanks everyone. It’s good to hear people’s exoeriences. At the moment I’m reluctant to go anywhere which I know has to change. Once I’ve done the things she likes to do once then I will have a bit more confidence.

Colonies that is such an inspiring and practical post.

Hi. DS2 was diagnosed aged 8. He has a fear of needles after a very traumatic blood test (took two of us to hold him down). So, he has never let anyone inject him. He always does it himself, to the point that he did hos own flu vaccine. He is fine now about flu jabs and blood tests though. Bit funny about having a pump as he doesn't want to be hooked up to stuff. He is at national level in his sport so thinks a pump will get in the way.

He did his mile swim badge three weeks after diagnosis. He kayaks (has jelly babies in a water proof pouch round neck), windsurfs and now does his chosen sport three times a week. He is 18 now. Passed his driving test the other day, works, studies and competes. Off to uni, which gives me the heebie jeebies. He isn't testing as much as he should and things have gone a bit more haywire as he has got older but not dangerously so. He doesn't drink, smoke, do daft things because he really doesn't want to go to hospital.

I think it was easier for us as my mother and sister are diabetics, so blood testing and injecting our are normal. To be honest, my other son has a range of neurodiverse conditions and diabetes has been much easier and better supported than dealing with that. If DS2 had to have a something then diabetes is the easiest something to have.

Things I have learned

Clinics are never happy - too high, too low. Just roll with it.

Adults think diabetics need injections. Just make sure the adults in your life know this isn't the case for hypos.

Adults don't listen to the child, who is the expert.

Get double of everything. Take spare sets of stuff on holidays, weekends.

Carb counting is a faff but means they can eat normally.

Do not be surprised at the number of people that still give packets of sweets are ok for a present.

Friends are great. The school kids will notice if she is having a hypo. Educate them.

There will be some shits 'eat sugar and die' and 'ha ha, I can have a donught' whilst waving it at him come to mind.

But then others will be brilliant.

It is a pain and you always have to think about it, take stuff out with you. Times of sickness, actual vomiting can be very worrying. Medical staff in hospitals are not very knowledgeable about diabetes.

Has its funny moments. We were out at a tiny town with big castle. DS had massive hypo - 2.3 I think. He was soooo excited at being able to go and buy a Lion Bar. The shop keeper obviously thought we were the strictist parents in the world as DS spent ages choosing and wondering what he'd never had.

My brother has it and was diagnosed at 11. It was a HUGE shock like you say!

My mum is with me now and wanted me to tell you ‘I thought it would never be normal again but don’t think too far into the future just take one day at a time. It DOES get easier, it DOES feel less scary. Good days and bad days, you will have both but it will be ok. My DS is 19 now and has just been away for a week abroad with college, he is starting university. He is well managed and he is living a very full and happy life. Occasionally things will go wrong and you will feel overwhelmed but it will all be ok in the end! I worried my DD (26) (Thats me BTW 🙈) would get it but she’s fine. So try not to worry about that! Also- please don’t beat yourself up when things go wrong because everything is a learning curve with type one! In a few years time you and your DD will both be experts and it will all feel normal and more manageable’

Mum wanted to pass on her love but doesn’t have a MN account.

my dh is type 1, was dx at 17, my mil always said that she found it harder to deal with than he did - he still went away to uni, played sports, partied etc

now runs his own business, plays sports still, still parties (even though is getting too old for it!) he has a great life, we are always aware of his health, i cook the right things, he did the dahpne course and it transformed the way he ate and injected.

your dd WILL be able to have a fun, full life! just give yourselves time!

When I was in nursing school, there were a couple of girls in our class who were diabetic. One I got to know quite well as we were in several classes together over the years. She'd been diabetic since she was 3. She had a pump. She actually became a nurse specifically to become a diabetes educator - in her experience, diabetic nurses were much more compassionate and understanding when it came to diabetic teaching compared to nurses who were not diabetic. I think she was living on her own, but I could be wrong. I do know that she eventually married and gave birth to a son - all while being diabetic.

Thanks everyone. Having a ‘down’ morning again so going to get a cup of tea and sit down and re read this thread.

Big hugs to you.

My 12 year old niece has it, diagnosed at maybe.. five or six? She's fine, very active. Medical tech has come on so much these days! You can get a pump that'll make the injections go so much easier :) Be kind to yourself, you guys have got this.

Thanks all. Had a good cry earlier and feel a bit better.

Is it normal to still be crying a few days each week? Diagnosed since dec. still feel terrible for her. We are in the honeymoon period and I wonder how much harder it gets when the honeymoon period is over? I’m guessing quite a lot. Still so scared of my eldest getting it too. She was drinking a bit more than usual the other day and I tested her. She got extremely upset but bloods were normal and I relaxed a bit. Now she’s drinking more again and eating more. My sensible side says she’s 10 and having a growth spurt but the other side of me is panicking again. Feel like all I do is worry and cry now. When does it go away?

Agnurse..."It's not genetic"....Are yes actually, it can be. Thought you were a nurse?

I do think it's really rare for both siblings to get it though.

I think it’s rare too. But not impossible. I’d never have thought my daughter would get this so now thinking maybe my eldest will too. Just don’t feel v lucky. Eldest would find it even more difficult to be honest. Just don’t think any of us would cope with it. Anyway, I’m just venting. My friends have heard enough, I’m sure.

My daughter has been type one for 5 years and is now 13.
Yes, they can still do nearly everything but nothing is really the same as before and that's the truth - it is a huge burden and worry, and I have struggled massively with my fears over her future. Not so much as in managing the disease physically but rather how her mental health will cope.
There is definitely a genetic component - we have 6 type one's in our extended family. We just won't know why some of us are developing it and not others.
You will cope because you have to. And some days will be brighter then others. There is so much to be optimistic about but allow yourself to grieve if you need to. Please join the FB Page it's fantastic! Wishing you both all the best x x x

Yes I’m worried about her mental health. And mine. I’m so sad that she’s not going to be able to do anything without thinking and planning and checking - while all her friends are carefree! It’s not fair. I’m worried about the teen years and how she will handle them. I’m worried about her being pregnant in the future and I’m worried about the other autoimmune diseases that she’s more likely to get. Just full of worry. 😢

It’s still early days for you in your journey through life with a diabetic child. You need to be much kinder on yourself. Yes it is a big adjustment to life, yours and theirs, but it is also not the end of the world at all! My healthy happy irritating grumpy ds14 was diagnosed 10 years ago. He’s a normal teen who just happens to have a bit extra in life to deal with. It will get easier to manage physical and mentally for both of you. Try not to stress about your other ds, stressing about it won’t change the outcome.reread the whole thread when you’re having a wobble it will help you see the future is still as sunny and full of opportunities for your dd as it was before🙂

I have a 12 year old type 1 daughter diagnosed about 18 months.x

All of your sensible words do help. Some days I feel a bit more positive and back to normal but then something changes and I feel so down and sad and worried. Every little thing she says is wrong with her sends me in to a panic on the inside although in the outside I’m calm. She has regular tummy aches and sore toes (that was a new one today) and doesn’t want to go to school and feels sick etc. I’m sure it’s her bodies way of getting back to normal along with a bit of her own anxiety nutrition it does make me panic even more.

I don't have a T1 child, but I've been T1 myself for 25 years, and I remember the early days being full of worries and fear about the future. It's completely natural - it's a big lifestyle change to deal with, whether for yourself or your child.

In some ways, I think once the honeymoon period is over it gets easier, as by then things have settled down, you're more into the routine, and you've learned to just get on with it. I'm sure your daughter will cope just fine - it'll be her normal to deal with it. Testing and treatments are so much better now than they ever have been, and it's easier to be an active part of your diabetes now. You live with diabetes, you don't have to be ruled by it.

I think there is a genetic link - I'm third-generation T1 (my mother and her father both had it, plus their siblings) but so far my two children are free. They do know what to look out for, though, and if you're worried about your other DD, I would recommend the trialnet testing.

Good luck to you and your daughter - I'm sure this time next year everything will seem a whole lot more manageable. Good days, bad days, they happen, but you learn to deal with them.

She will be fine but it’s ok to be anxious. I’m about to take a type 1 diabetic on a week long school trip for the second time. First child had a pump this one injects. We’ve had a meeting with the diabetes nurse. Yes it is erupts but as a parent I would happily have your daughter to stay-I’d just want instructions. I wouldn’t expect (or want) you to stay-just be available to give advice.

It’s amazing how fast you will just absorb this new situation into you day to day life. You and dd will get better at recognising physical symptoms that are diabetes related and those which are just general colds or feeling off colour like any child.Anticipating situations like sleepovers and sports will just become second nature.Try not to dwell on the list of horrors that ‘might’ happen in the future. Look at all the healthy pp on this thread for reassurance.It will be ok-promise.🙂

Foodthief it will be ok. My son was diagnosed at 11, he's now 25. He's been to uni, kept himself fed and well for 3 years, done Duke of Edinburgh ( with extra food given out daily by the leaders) , he drives, sails, goes on holiday, to festivals etc etc.
It's very scary at the beginning and I won't lie, I found the teen years quite difficult as they are constantly growing so doses of insulin change as well as trying to get them to take responsibility for their own injections and remembering their kit. Keep up good habits and communication and make a friend of your diabetes nurse. However you will get used to it and so will she. Now my lad says it's part of who he is. Two of my friends kids also have it and they have both just qualified as doctors . Wishing you much luck.