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.

Thanks all. Hopefully this awful feeling in the out of my stomach will pass soon. I’ve been recommended a book called ‘think like a pancreas’ on a Facebook page so I’m going to order that and see if that helps me understand it and feel a bit better.

It must be stressful for you OP. I was diagnosed when I was 12. The medication regimes are a million times better than they were then the progress is amazing and it just keeps improving.

Hi Op. I have t1 diabetes and have done for nearly 20 years.
First of all- yes it's totally unfair. It is normal to cry and be in mourning for what you and your dd have lost. Yes you will always be worrying and having to think about the diabetes as part of your life now.
BUT it gets better. I promise. Eventually it just becomes part of your life and another thing that's almost automatic and you just factor in to the day. It's just a thing you have to deal with as part of normal life.
Also bear in mind the technology to help your dd deal with it is improving all the time. 20 years ago I had 2 injections a day and ate a prescriptive diet around them. Now I eat what I want and do what I want and adjust around it with my pump.
In another 20 years I expect far more advances,an artificial pancreas is now on trial which will do everything for you. Your dd has a lot of years ahead of her for the ways of dealing with this to get better and better.
As for pregnancy- yes it will be harder but it can be done. I have a beautiful and healthy 5 year old. If your dd wants a baby later there will be a lot of support for her before pregnancy to prepare her and during it (I had weekly appointments and emailed nurse frequently in between.) Ds was born at 37 weeks, normal weight, straight on the ward with me, he was and is fine.
Think like a Pancreas is an excellent book, good choice.
Keep going. Not going to say it's easy but you will get there.

Things get much easier once honeymoon period is over as at the moment you can't tell when her pancreas is splurging stuff out and so she's probshaving more hypos.

Without sounding mean, I do think you seem to have taken this really badly and your tearfulness and upset is knocking on to your daughter. It really isn't the worst thing that can happen. Yes, it is a bore, yes you have to be more vigilant, yes, if it is badly managed then there are health implications but it really isn't the awful thing that it was 60, 50, 30 years ago. There is lots of research and your daughter will have a long, normal, happy life. There are positives. Son 2 doesn't really drink because of it, he certainly doesn't smoke and is quite careful and responsible. Of course I worry but matched against Son 1s diagnosis of autism, diabetes is much easier.

I think if you are still very weepy then I think you need to get some help for you because although it is a shock, and not ideal, you seem to be catastrophising and projecting a bit more than this warrants - although I take on board that this is a safe place to let all that out so the reality may be that you are really together and coping brilliantly. It's fine to have a shit day with it but if that is every day then perhaps you need to look after yourself too as your attitude is going to have a direct affect on your daughters health and well being. I fell to bits after my son's autism diagnosis and had a serious bout of depression. I wish then I'd known that he would be working, driving, happy. Life is still tough for him and us and I wish he had more of a social life but hey ho. Perhaps that's why I dealt with Son 2s diabetic diagnosis better or because my mum is diabetic so needles, injections are part of our DNA, I don't know. But look after yourself.

@flyingarcher - I don't think it's helpful to tell @foodtheif that she is going to have a negative impact on her dd because of how she is processing this change. I'm sure she's doing the best she can.

@foodtheif - yes, it's normal to still be grieving about this. It's terrifying at the beginning and it's very hard to imagine how it could possibly become normal. Your clinic should have a psychologist attached who can give you and your dd some support in processing this. You could possibly talk to your DSN about this?

It's quite lonely at the time of diagnosis because it's such a misunderstood and underestimated condition, and because it's all so constant. Perhaps you could set yourself some time every day to grieve/cry/rant? It might help knowing that you do have an outlet.

Thanks guys. I don’t think my daughter knows quite how upset I am about it all. I usually let it out after the school run although she has seen me tearful at diagnosis and I think twice since we’ve been home. I will make sure she doesn’t see it again. Don’t want to make things harder for her.

Our team don’t have a psychologist anymore. Think they are recruiting so maybe in the future. Our team seems very busy and there is never an appointment easily available either.

It is terrifying. I know she’s ok at the moment but I worry about the future and how she will cope. Her life will never be normal again! I dread her getting cealiac disease too and the complications that could happen in the future. I dread the possibility of seizures and comas if she goes low. It’s such a worry. All of it.

Honestly it doesn't warrant all this fear. I have had type one since I was 12 and also have a type of muscular dystrophy. I know which one I would rather get rid of.

Also I used to fit when I had a hypo at night. It wasn't nice but it really wasn't the end of the world. My parents injected me with glucagon and I would wake up. I grew out of it by the time I was 13.

I have two dc and a job. I go on holiday every year. I eat what I want. I go to the gym, I work out almost every single day. I go swimming, I've been snorkelling in the Caribbean Sea. I've been blind drunk many, many times. I work in the community and have never had an issue with the dvla. I like to think I have a pretty normal life tbh. It doesn't need to all be about diabetes. Yes it's there but it's just part of my very normal (to me) life.

I know people saying 'it's not the worst thing that could happen' isn't helpful but it really isn't. I really think you need to ask your gp for some talking therapy, in our area you self refer.

I've had type 1 for more than 20 years. I can assure you my life is normal! You will all adjust. If you are still really floored emotionally it may be time to think about counselling.

If your DD gets flash glucose monitoring like the Libre she can set it up to text her when her blood sugar is going hypo/hyper. No need to worry about comas.

Yes there's lots of options to alert to hypos these days. Even service dogs!

You are all making me feel better. Thanks. Think it’s because I keep reading the horror stories and see on a Facebook page I’m on petiole are taking about poss going blind and poss having leg amputations. I know deep down these are unlikely to happen but it does worry me for her future.

Unfortunately we are not allowed glucose monitors as we don’t fit the criteria and we wouldn’t be able to afford them either.

Hi op I did message up thread but you're right it's terrifying as she is your child. My son is 3 has been diagnosed a year. My Husband also has T1 and I've never been scared about his diabetes, he lives an absolutely normal life it NEVER stops him doing anything. Extra planning yes ,extra food stops/finger pricks yes.

However when it's your baby it's a complete different ball game. The Dexcom G6 has been a god send and throughly recommend it. We pay £160 a month and it's worth every penny.

You will will have good days and bad days but if your bad days are getting too overwhelming go and see your GP.

I think she might meet the criteria eventually even if she doesn't right now. Don't discount it. It's still early days they don't know enough about her control to give her one etc. Although to be honest I think it might make you more stressed right now seeing all the ups and downs on that screen

Definitely a genetic component in my ex's family - my ex has it (dx at 17) his niece has it (dx at 2) his uncle had it, and his uncles aunt (if that makes sense). In their family it seems to not go directly, but takes a side step each generation. so aunt x, then her brothers son, then his brothers son, then his sisters daughter...

Anyway I digress, my ex is now almost 50 and very healthy and active, has never bothered with pumps but for someone that faints at a short discussion about a joint cracking as you stand up... he has been injecting no problems since he was diagnosed. He eats normally, if he's out for a mean and has a lot of food he might inject a unit or two extra, or test a bit more afterwards, but it doesn't stop him from enjoying himself. The main problem he has is that he tends to always inject in the same place and that can cause issues so listen to them when they say to rotate sites!
My niece is now 17 and has a full life, going out, enjoying school, trips abroad, going to gigs etc. She uses a pump and the main issue is sometimes stubbornness (as with all teenagers) but generally its managed very well. My exSIL found the juvenile diabetes research foundation (JDRF) very useful and the local GP was very supportive. Her primary school were excellent - one of the nurses from the local GP surgery came in to train the staff how to deal with a hypo etc before she started school.

Both attend 6 monthly diabetic clinics where everything is checked and eyes are tested and any adjustments are made.
Its a terrifying time but it will be fine, your child will get used to it and you will (mostly) stop panicking.

Keep some hypostop gel handy and become familiar with her hypo signs (could be grumpy or sweaty and pale).
I could always spot a hypo starting in my ex as he'd start to snap and his skin would go very pale. My niece doesn't get grumpy but starts to sweat and also go very pale skinned. As she grew up her friends got to know her signs and would tell her to have a bar of chocolate!

I had a standard glucose monitor for the first 20 years, never had a coma, never hospitalised or received first aid due to diabetes. It will be ok.

Yeah I think you could be right. Sometimes when I test her shortly after breakfast (before we go out for a walk or some sort of exercise) she’s gone really high. I think it’s the cereal making her spike but I have to remind myself that even non diabetics will have higher sugar after a meal. 😂

Most of the issues that occur with T1 are because it's not managed properly, because the person maintains far too high blood sugars for a long period of time. All those stories about amputations etc will likely not be people who manage their T1 properly.

I'm not sure how it works elsewhere but the 6 month clinic in Scotland checks everything - average blood sugars over the 6 months, feet for scratches or cuts that aren't healing, eyes for sight deterioration and a full health check up.

A friend of a friend has it and we met up for a coffee and a chat. She said she’s never been hospitalised since she was diagnosed and never had a seizure or a coma. I just need to focus on the positives and not the negatives that may happen. Just so hard not to worry at the moment.

@foodtheif "see on a Facebook page I’m on petiole are taking about poss going blind and poss having leg amputations." It's not a low carb page is it? I'm not anti low carb in itself, but some of the scare mongering propaganda on the groups is disgusting. Just do the best you can and allow her to learn to do things herself and it will be ok.

To get you started on the positives - she will always be more in tune with her health than someone without type one, she will have regular health checks which will pick up issues early, she will learn to be more responsible than other children her age, she will learn empathy, her mental maths will be great, you will have to parent her much more consciously - really thinking about how and when to let go - and this can develop a really close bond between the two of you.

Have a look at some of the videos on this site talkingaboutdiabetes.co.uk/tad-talk-events/ for more positive stories.

I’m not sure what page it was now. I’ve deleted most of the ones I joined as most people are stressed and venting and I need more positivity - like on this thread! Thanks. I will have a look at that video later.

I hope the clinic will give more guidance about when to test! Testing just after eating is bound to freak you out. It's about patterns, not single results. Even when my HBA1c has been in the non diabetic range (when pregnant and TTC) I would get some high readings.

I have a diabetic daughter who is now 40. I can empathise with you 100%. Two months is very early days. You must accept that this will take time and there is a grief process for the healthy child without problems that you thought was your little one. First, let yourself grieve, it is natural. Then accept her new life. Yes, there will be some ups and downs. I won't deny it. I was terrified for her childbearing years, which were very difficult, but she has three healthy children and 35 years after diagnosis, no complications. You will find a way through this as a family. It is differnt for everyone, no simple answer. my daughter was great on a pump for years but now has gone back to injecting. Take your time. Try not to obsess about research, cures and new treatments. Diabetes uk are very supprtive with children, great holidays that really help to normalise. Do you have a Diabetes nurse/health visitor/ They are lifesavers. Her diabetes is unique to her, and you will learn as you go along. Focus on helping her to feel normal and accept that you and she need to learn and manage her hypos without drama. I think it is too early to think about a pump. You dont say how old your daughter is. Talk to your team, but for now just let things settle. its early days

finally Friday, sadly you are wrong. Every diabetic will tell you that sometimes it just doesnt behave whatever you do. You have to go with the flow. Please dont judge people who have complications

Foodthief, get off that Facebook Page!