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 son at the moment is getting tested for it and I already feel sick to my stomach. Can I ask what symptoms did your dd have?

I don't have a child with T1DM, but I'm a nurse and a pediatric nursing instructor.

It's rather unlikely that your other daughter would develop T1DM. It's not genetic. It seems to be the case that a child gets a viral infection and the body produces islet cell antibodies as a result.

It's quite normal to go through a grieving process when a child is diagnosed with a chronic illness. You might see if there are support groups for families of diabetic children in your area. Your diabetes management team might also be helpful.

The good news is that we have many exciting new developments in the area of diabetes care. Diets aren't nearly as restrictive now as they used to be. By the time your daughter becomes a teen, we may have even more options available.

She was drinking loads. Weeing loads. Wet the bed which was v unusual for her. Sore throat and tummy aches. I hope your son doesn’t have it. Is he in hospital?

I don't have a diabetic child, but I have type 1 myself.

Be kind to yourself. It is early days. I've had diabetes for more than 20 years. My health is good, and it hasn't stopped me from doing anything.

I would recommend looking into Freestyle Libre testing. It makes management easier. Diabetes team will advise.

I have a teen DS with type 1, is now 19 and doing the same if not more than most his peers.

I was distraught when he was diagnosed (he was 15) and yes we have had rocky patches, but overall we are doing ok.

There is loads of excellent support on Facebook xx

My son is 7 and has been diagnosed 4 years next week. Although a pain in the ass, he takes it his stride really and there’s nothing he can’t do that other kids can. Happy to answer any questions

I dont have a child but had T1D myself since being a child.

Just remember to cut yourself some slack along the way. Yes good control is important but we ALL have days here and there where we have unexplained highs and lows -treat/correct etc but don't stress

You can have your other child tested through trialnet which checks for antibodies. This is free and part of ongoing research that looks at how t1 develops and they also run some prevention / delay studies.

There is a genetic component- it’s around 10% risk for siblings of children with t1. It is a similar risk if your dad has t1 and slightly slower if the mother has t1. There is a trigger factor, although no one knows 100% what that is, it is likely to be a range of different viruses.

I have been t1 for 25 years, since I was 11. It’s shit at times but I’m still here and touch wood have no complications. My dad is also a t1. I use an insulin pump and self fund a libre sensor.
A pump will probably make life easier for you and if you combine that with a libre or cgm that will also help. The dexcom is probably he best cgm as the sugars will read straight to your phone and alarm if you high or low. Several other people can also ‘follow’ the data so if your daughter was at school or out you’d know she was safe.

As a T1 diabetic female in her mid 20s who has had the condition 15 years I can honestly say she’ll be more than fine - she’ll thrive and enjoy life to the full. I have climbed mountains and scaled remote islands, I have seen so much of the world and am doing great health wise. I have T1 friends who are also doing so well - they are parents, career driven and so much more than their condition. The condition is an adjustment not a life sentence as the media might have you believe. She’ll be fine but i’m here to chat if you have any questions ♥️ x

Thank you all. Even just reading what you all say about it has tears pricking at my eyes. Can’t seem to get over it. Maybe the shock is hitting me now. She’s been so good with all the injections and now she’s saying she doesn’t want them anymore. Breaks my heart. She is also such a snacker that I’m trying to keep her snacks to one biscuit or low carb so that we don’t need to do another injection. I’m pleased my eldest isn’t likely to get it. She doesn’t have symptoms (apart from the tiredness) but I think at 10 it’s just hormones etc. Fingers crossed anyway. I do remember the nurse saying someone would be in touch about trials or something but haven’t heard anything yet.

Foodtheif

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My husband has been T1 for 40 years and is fit and healthy. It hasn’t limited anything we do although sometimes a little planning is required. I’d say being informed is the key. We bought a book that gave all sorts of information and helped take the fear out if things eg how do I manage long haul travel ? What should I do if I get food poisoning etc.

My dd was 3 y 1 m when she was diagnosed. I struggled at first and cried for the life I thought she had lost

She’s 9 now. Has a cgm and insulin pump and she’s happy and it’s all second nature we just have to take an extra bag when we go out of supplies and spares x

T1 over twenty years here. Three kids, great career, wonderful life. It’s a bloody pain in the neck and a damned nuisance, but that’s it.

She’d be better with a pump. She’d just take the insulin to cover the snack then and it wouldn’t require an injection - you can also give smaller amounts of insulin than with a pen injection.

There is also something called an iport if you don’t switch to the pump. The port stays in for three days and you put the pen into it. So effectively only one injection in three days.

I second what Notageek said. My DH has had T1 for 40 years, and is one of the healthiest people I know. He is sensible (to a degree) about food and drink, but it hasn't stopped him doing anything at all. I think it's probably easier to be a diabetic teen now than it was 20 years ago. I met DH at uni and he lived a perfectly normal student lifestyle.
One thing that's really useful is that people we spend a lot of time with are aware of the nuances of hypos. He generally picks it up before anyone else, but it's very helpful when friends can spot telltale signs, and know what to do about it.

On a day to day basis, I'd say that portion control is key to good control. He weighs his cereal every day, and we weigh all our carbs. Makes working out how much to jab much more accurate.

I believe Diabetes UK put on age-appropriate events for newly diagnosed kids/teens - worth investigating perhaps.

T1 diabetic here; diagnosed 21 years ago.

I won't lie: testing and injecting are not exactly fun. However, you get so used to it that it becomes second nature.

I always joke (but it's true!) that I'm even diabetic in my dreams. If I dream I eat something, I also dream I inject!

Your daughter will be fine

Pump all the way! I love my pump! We call it Pedro 😂 just had it measured for my wedding attire also! 😊 x

Thanks all. Do these pumps and other equipment mentioned have an age limit? Or do you have to be diagnosed for a certain amount of time?

My son was diagnosed just over 2 years ago, just after his 7th birthday. I remember well that the 2 week point for me was horrific. Proper waves of panic for his future, fear and an overwhelming grief for the future I thought he had lost. Honestly, our nurse laughs at me now at what I know and how I cope. Time is your friend, day at a time. My son has adjusted brilliantly, I am so proud of him. I was careful to not show him my fear.

As you get to know other parents they all have strong views, which device to use, pump or pen, blood glucose monitors etc you are your child are unique and will find the right fit for you

No age limit ! Cgm is amazing we have a dexcom and it means we can sleep knowing it’ll alarm if she’s too low or high
Pump great too much better than mdi

for you. It does get better I promise.
You're grieving and rightly so. You're thinking of the carefree childhood you wanted for her and are angry that she can't just do things on a whim like her friends.
It's really early days but perhaps maybe look into a pump at some stage because that allows as close to normal eating as possible again.
It's been the right decision for my DS and has allowed him to join in with his friends whenever he wants with trips to shops, cinema etc. No more fiddling around with needles and pens.
The Freestyle Libre also a game changer in terms of reducing the need to finger prick quite as often and for building up a picture of how foods/activities affect blood sugars.
My DS does everything he wants and while there's forward planning involved I can honestly say he does everything (and more) that I see his friends do.
On the genetic subject, I fear for my other child too, so completely get where you're coming from. We absolutely do as a family have a strong genetic predisposition to Type 1, but if it happens again we'll cope because there's not really any other choice.

It's a crap thing to have to deal with an undoubtedly changes everything but while I'm not convinced there'll be a cure, I firmly believe that technology will be so good that a normal, carefree life will be possible again in the not too distant future.

Take care of yourself and allow yourself to be angry, scared etc. It'll help you accept and move things on.

My 10yr Dd diagnosed summer 2017. Best advice so far is get the dexcom 5 or 6, or another similar CGM system. We used the libre but she was having continuous life threatening lows overnight and only showing in the morning on her history graph despite regular checks. Dexcom alerts you before a low happens so it can be prevented and is a life saving piece of equipment.

Oh hugs. It’s not what you would wish for for your child but you will be fine. If you are on Facebook there are lots of great support groups there.

Sorry to hear about your dds diagnosis, it's a lot to take in at first but you will get there. Ask her DSN about pump therapy, it's brilliant! Diabetes UK have a very informative and supportive forum and a section for parents, definitely worth a look.