Frightened Newbies - Mummy and Daughter

Kabbs

Member
Relationship to Diabetes
Parent
Our lovely 12 yr old daughter was diagnosed with type 1 diabetes yesterday evening. It is such a shock for us all. There is no history of diabetes in the family. She wasn’t really ill but had lost weight and was drinking and weeing lots. I feel so gutted for her and am very frightened about how this will change her life. I wish I could take this away for her and have it instead but I know I can’t. I would do anything to change this. The team at the hospital are being lovely but we feel like we are in a bad dream. Please, if anyone could offer us some reassurance we would be so very grateful.
 

SB2015

Forum Host
Relationship to Diabetes
Type 1
Welcome to the forum @Kabbs but sorry you have needed to join.

Sorry to hear about your daughter’s diagnosis. It is a shock at any age, but it is a manageable condition, and I can reassure you that it does get easier. It is a very steep learning curve at the start, but it will become just the new normal. That will take time and I am glad to hear that you have a good specialist team.

I would recommend the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It is very clear and regularly updated. It explains what is going on and also has practical advice about all different situations. I still dip into mine even after 12 years.

Type1 need not stop your daughter doing anything that she wants to. It will just take a bit of planning and organising. Take things step by step. Keep in touch and keep asking any questions that you have. Nothing is considered silly on here. Just ask.

I will tag some of the parents that are on here who have a lot of experience in managing with a child’s diagnosis, including @Sally71 , @Bronco Billy , @LucyDUK

Keep in touch
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Ohh - have a virtual {{{{Hug}}}} both of you. Just don't panic, Mrs & Miss Mainwaring!

Please try not to be frightened because as long as you take your time, and put both your brains into 'learning' mode - it becomes understandable. Once you understand more - it lessens the scary things!

It will NOT stop your daughter doing 99.9% of ordinary stuff.
 

Thebearcametoo

Well-Known Member
Relationship to Diabetes
Parent
Hi, my 10 year old was diagnosed nearly 18 months ago and like your daughter had lost weight and was drinking and weeing lots but was still doing gymnastics and trampoline and all her usual things up until the week she was diagnosed.

it’s a lot to take on board to begin with. You’ll get information overload on top of dealing with the shock. But it will get better. Diabetes teams are great with children (you get way more support than adults) and you will have a team available to you any time day or night (middle of the night it will be your local paediatric ward) so even once you’re home you’re not alone.

Diabetes is very manageable. She will be able to live a normal healthy life and will get used to testing and getting her insulin. There’s lots of neat kit available now that helps too.

We’re here to support your feelings (use your team’s psychologist too) and to answer practical questions. You’ll soon get the hand of it.
 

stephknits

Well-Known Member
Relationship to Diabetes
Type 1
Hi from me too, my 16 year old daughter was diagnosed on 1st May. It is a huge shock and will take time to adjust to the new ways of doing things. Glad the team are lovely - they will be your new best friends for a while to come - do make the most of them. Take care and keep in touch.
 

Lisa66

Well-Known Member
Relationship to Diabetes
Type 1
Hi. I can imagine how shocked you are. It’s all very new to you. It’s quite a learning curve, but you will get get your heads round it quite quickly. Your team are there to help and support you, so don’t hesitate to ask them anything at all. Lots of parents on the forum too for help and advice.

I can only second what has already been said. Managing the condition is more straight forward than it’s ever been, with lots of tech and gadgets.

Yours daughters diagnosis sounds just the same as mine, same age too...and you sound just like my mum did, over forty years ago now. I don’t think it’s ever stopped me doing anything. Sport, travel, work, two children, a pretty normal healthy life.....nothing to stop her doing much more exciting things than me. Things just take a few minutes extra thought and a little more planning. I wish I could take your worry away for you, but you are a mum and it’s what we do.
 

Kabbs

Member
Relationship to Diabetes
Parent
Thank you for your responses. I have been lying here awake for hours going over and over and over it all. What has caused it? What have I missed? Is this all a big mistake? Why and how can there not be a cure? It’s just all so unfair for her. I am so angry and sad and gutted all at once. We have so much to learn so quickly and it’s overwhelming. My daughter is doing brilliantly. I’m so very proud of her. She is injecting herself already and being her usual happy self. Maybe she doesn’t understand it really yet. Thank you for your help. We really do need it right now.
 

Thebearcametoo

Well-Known Member
Relationship to Diabetes
Parent
It’s good to process your shock and grief of the ease of life you thought your daughter would have. She will adjust much more quickly than you do. Whilst we understand some things about the causes of diabetes we don’t understand everything. It’s likely that there’s a genetic component and that it gets switched on with some sort of viral infection or illness a little while before you began to notice symptoms (so probably several months ago and maybe as long as 6 months ago). Nothing she or you have done has caused it.

Hypos (glucose levels below 4) are serious and need treating immediately but respond well and she will bounce back quickly (my daughter had a stubborn one last night that needed a few doses of glucose and took over an hour to get back up above 4 but those are less common than the ones that take 15 minutes to treat and then she’s back on with her life). Hypos are a normal part of diabetes and whilst the first one is scary you will soon take them in your stride.
Hypers (above target) are generally less urgent and the aim is more about having as much time in or near to target for long term good health outcomes. (Obviously if she’s very high then that needs treatment with insulin even if she’s not eating but most of the time you won’t notice she’s above target unless you’re testing before she eats).

You’ll be told about ratios of insulin to carbs etc but your team will do all the maths. If she has a smart meter that will work out the additional insulin needed if she’s above target too and give you settings for reducing insulin ratios before exercise or increasing them for illness (or PMS). The carb counting will seem daunting for the first couple of weeks (once you start doing it, you may be on fixed doses of insulin to begin with) but you soon get used to doing it and she’s of an age where she will take on a lot of it herself.

It’s good that she’s already injecting herself (although there may be times where you wish she would just let you do it so you can get on with it ;))

Your team will talk to you about continuous monitoring (Libre being the one that gets prescribed) and insulin pumps but it’s good to get the hang of finger pricks and injecting.

They’ll talk you through the difference between fast acting bolus insulin (the one you give with food, often novo rapid) and slower release basal that is usually once a day (possibly lantus to begin with). There are other brands of insulin and they all have their pros and cons and suit different people so don’t be afraid to say if she finds one stings when injecting or anything like that (we do basal in the morning because trying to get a tired child to do another injection before bed was too much and she does it herself in her thigh because she doesn’t like the lack of control of someone else doing it especially in a place where she can’t see. So whilst they will start you off with slow acting in the bum (slower absorbing site) and in the evening do talk to them if that’s an issue for any reason (changing the time of basal doses by more than an hour or so needs support because of how long the dose lasts and how the doses may overlap so don’t do that without talking to your team).

There is a lot of information to begin with but your team will go over it again several times in the first few weeks (and then at monthly clinics and then at annual reviews and so on). Being diagnosed as a child means she and you will get a tonne of input and support from your team.
 

SB2015

Forum Host
Relationship to Diabetes
Type 1
Itis absolutely nothing that you did that has caused your daughter’s T1. It is an autoimmune disease and some antibodies inside her got going and have knocked out the Beta cells in her pancreas that should be making insulin.

It is great to hear that she is already doing her injections. She will adapt and gradually you will all settle into the new normal life.

Keep in touch. We are here for you.
 

stephknits

Well-Known Member
Relationship to Diabetes
Type 1
Hey, just checking in to wish you all the best for today. Each day seems to go on forever with so much information to deal with and the emotional rollercoaster is so exhausting. Try to be kind to yourself. We are here,
 

Lisa66

Well-Known Member
Relationship to Diabetes
Type 1
Morning. Well I think the others have covered it really, but just to emphasise ,it really isn’t your fault and there’s nothing you could have done to prevent this. I guess you do hit the ground running, no easing yourself in trial period.... and all the information must feel overwhelming in such a short time.

Great to hear your daughter is doing so well. Youngsters are very adaptable to new situations. I seem to remember just getting on with it and I do appreciate that my mum and dad, whilst obviously concerned, hid any worries from me. So take your lead from your daughter and how calmly she deals with everything...easier said than done I know...but you are in this together.

....and please don’t listen to any negative stories people tell you. These always come from ill informed people or headline grabbers who really do not know what they’re talking about....instead listen to your team and the well informed, knowledgeable people here...lookout for all the high achievers in all walks of life, who have got where they are with their condition toddling along quietly with them. There will be people out there that are getting on and you don’t even realise they have diabetes. Maybe for some it’s even pushed them on to achieve more and prove those negative voices wrong!

I’m another one to say, don’t forget to look after yourself too! You are not alone in this.
 

Sally71

Well-Known Member
Relationship to Diabetes
Parent
Hi there, I’m a bit late on this one and can’t really add anything, but welcome to the forum! Yes you are in shock at the moment, and it is a lot to learn, but you will get through it because you have to. Just take it one step at a time, learn about the injections, then the carb counting, then find out about pumps and continuous monitors and see if you think they might be useful. Don't try to google things and don’t expect to know it all at once, it's too much to cope with. And definitely don’t listen to people who think they know all about it just because their mum's cousin's sister in law's friend has got type 2! Work with your medical team, they will help you through, and as long as you've always done your best to keep your daughter's blood sugars within range as much of the time as possible, then there is no reason at all why she shouldn’t live a long life and be able to do sports, residential trips, parties etc and join in with whatever her friends do. It just takes a bit more planning sometimes.

Your emotions will be all over the place at the moment and you have to grieve, that is normal. You will be feeling guilty, also normal although there is absolutely nothing that you could have done or not done to prevent this. It does get better, honest! As you get used to the new routine it becomes a lot easier, hypos become a lot less scary once you've dealt with one or two, and you will slowly learn all you need to know. In a year's time you'll be pros! We are 8 years in now and it's just a part of life for us, hardly ever see our medical team apart from 3 month check ups or when we are due for a new pump, and I’d like to think that we can deal with pretty much anything that diabetes can throw at us. That will be you too one day :)
 

Bec2015

Member
Relationship to Diabetes
Type 1
I'm a bit late, but just wanted to say hi @Kabbs and welcome to the forum!

There's nothing I can add to what has been said by everyone above, but I wanted to echo that this diagnosis is not your fault. It sounds like your daughter is adjusting to things amazingly quick! It will take time to get used to certain things, but you will both get there.

I've only recently joined the forum myself, but as you can see there is a wealth of experience and support available. Hope that both you and your daughter are having a good day :)
 

Lilmssquirrel

Well-Known Member
Relationship to Diabetes
Parent
Hey,

I'm a bit late to the party but just wanted to say hello as my daughter aged 10 was diagnosed last Tuesday and I could've written your posts myself. I've had some fab advice on this forum already - it's saved my sanity (especially from @trophywench who had me laughing through my tears). Don't know if your daughter is too old for it but @Thebearcametoo recommended Babysitters Club on Netflix where one of the main characters as T1D. This has really helped DD and she's already telling me she's not interested in the research project our consultant was trying to sign us up for today as her diabetes makes her special and she'd rather finger prick forever than be cured (no doubt she'll change her mind in a few years)

Fingers crossed that you guys have had a better day - and feel free to PM me if you want to share war stories!

Rebecca x
 

Kabbs

Member
Relationship to Diabetes
Parent
Thank you everyone for all of your encouraging responses. I can’t tell you how much it helps us. I knew nothing about type 1 diabetes before two days ago, nothing at all. I’m sorry I was so naive. My daughter is being very upbeat about things and quite matter of fact. She is such a trooper. I am still feeling pretty overwhelmed tbh and keep crying but I’m really making an effort not to do it in front of her. It’s hard as I’m scared to leave her side but I occasionally wander into the corridor on a made up errand. I’m not sure how long we will be in hospital for. My daughter’s blood numbers are up and down and earlier today she went down to 3.7 but felt no different to normal, no dizziness, lightheadedness or anything. Is this a hypo and is this normal? X
 

Bruce Stephens

Well-Known Member
Relationship to Diabetes
Type 1
My daughter’s blood numbers are up and down and earlier today she went down to 3.7 but felt no different to normal, no dizziness, lightheadedness or anything. Is this a hypo and is this normal?
Yes, completely normal. I think it's usually said to be around 3.5 when you'd expect to feel something, but it depends a lot. And our meters aren't accurate enough to distinguish that kind of a small difference anyway. (It's also possible to lose awareness of real hypos, and that's made more likely the more time spent low. Though if we do lose awareness, usually it returns after a while (a week or two) being more careful to avoid hypos.)

In any case, I think it's completely normal and I'm sure your healthcare team won't be too worried. Being too high and too low some of the time is just part of having diabetes; the idea's just to limit that time while not becoming too obsessive to enjoy life.
 

Barbie1

Well-Known Member
Relationship to Diabetes
Type 1
Hi Kabbs
yes anything less than 4 is considered hypo and needs to be treated though I have to admit that I don’t always feel awfully hypo at that level! But she should soon get to recognise the perhaps less extreme symptoms with more experience - it really is early days yet!

i was diagnosed at age 12, well, I had my 12th birthday in hospital actually, and 53 years later and at the end of a very successful career, I can tell you that the only thing it has ever stopped me doing was a free fall parachute jump when I was 19! Dreary beggars!
So don’t worry (I know you will actually) and just be there to support her in her new, and I’m sure many will agree, healthier life from here on.
She‘s doing great, and I hope you can encourage her to embrace this new challenge.

what is life after all without challenges to conquer!!!

hang in there.
And BTW, it really wasn’t your fault!
 

Thebearcametoo

Well-Known Member
Relationship to Diabetes
Parent
If she’s basically sitting around or lying in bed all day she may not feel a hypo in the way she would if she was standing up. Hypo symptoms vary a lot and she may have some, all or none. And hypo awareness may be present some of the time but not others. It’s actually good for you that she’s had a hypo in hospital and you’ve seen her be easily treated for it.
Here they keep you in hospital until your glucose levels are stable and you’ve had the first lot of diabetes education from the team. I would guess that they’ll try and get you home before the weekend but it will depend on how stable her numbers are and how confident you feel. Even once you leave you can always call the ward if you need to for even simple advice and you’ll have a whole list of numbers to contact your diabetes team.
 

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
welcome to the forum @Kabbs

Sorry to hear about your daughter, but lovely to see the warm welcome, practical advice and helpful shared experiences you have been offered already.

Yes diabetes is serious... it is also very often fickle and infuriating, and sometimes overwhelming... but it IS manageable, and with new gadgets, treatment options and technologies, well managed T1 is tantalisingly possible with less and less effort required.

Keep connected here, and keep asking questions!
 

Kabbs

Member
Relationship to Diabetes
Parent
Thank you again for your really encouraging messages.
Today we were allowed to go home for a couple of hrs which was lovely. Within minutes my daughter was racing around the garden and doing gymnastics with her sister. She really didn’t look ill at all.
Three days ago I was a sobbing heap on the hospital floor, asking them to give her my pancreas and crying for a cure. I’m still gutted for her, and really sad and oh, so very angry, but I’m starting to think that we might be able to do this. She’s so determined that she’s still going to do everything she wants to do. It’s lovely to see her like this. I can’t let her down by being the weak link so I know I’ve got to step up and do my bit too so she can do all those things and more.
I wish I could meet you all properly. You seem like a lovely lot. X
 
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