Mum of newly diagnosed 12 yo seeking a friendly ear!

[Zande]

My daughter (aged 12) was diagnosed nearly 2 weeks ago with type 1. We have been home from hospital for a week. She has gone back to school and is coping remarkably, she has been a real trouper. I am still adjusting - I did a lot of crying the first day and still have bouts of “ oh ****, this is our life now”. But on the whole I think we’re doing ok!

I would love to hear from other mums/parents about the early days of diagnosis and what it all means. I am a working single mum and was looking forward to my daughter enjoying some independence this year, catching the schoo bus with her older sister etc and me being able to work longer hours, but now that feels like it has been taken away a bit. I am feeling like I have to reign her in just when she is growing up and developing her independence. How worried/careful do I have to be? Is this the end of my life just as I was getting some back? My daughter so far has shown incredible maturity over it all - she understands it all well, is nailing carb counting and does all her own injections and blood checks. We are hopefully getting a CGM shortly. I am struggling a bit with how much this needs to rule our life or not??!

 

[Antje77]

I'm not a parent but I can give you a warm welcome to the forum, @Zande !

Is this the end of my life just as I was getting some back?

Nope.

was looking forward to my daughter enjoying some independence this year, catching the schoo bus with her older sister etc and me being able to work longer hours, but now that feels like it has been taken away a bit. I am feeling like I have to reign her in just when she is growing up and developing her independence.

Yes, but only for a while. If things go well she'll be able to do most things diabetes by herself pretty soon with you keeping an eye on it.
Until things have settled a bit you'll both be busy learning and adjusting very hard, and life will seem to be about diabetes only, if I go by my own experience 2 years ago. After a while most of it will become second nature and normal life will take over again most of the time.

Good luck, big hug for all of your family!

 

[Muneeb]

Not speaking from a parents perspective, but as a child who was looked after by my parents from diagnosis at age 8.
I'd say my biggest mistake was relying too much on my parents for diabetes management (yes I was young), yes they want to help the best they can, but nobody can understand your own body better than you. What triggers hypos, hypers, reaction to exercise etc. By no means is it the end of you life or hers, I've lived a completely normal life, excelled at school and college and work as a Chemical Engineer, which is quite a demanding job. Its never stopped me.

Yes you can support her, but its good she is gaining independence because she can learn more and will undoubtedly manage it better. I find it affects me more when others make a big deal of it. I've gone years without some of the closest people to me knowing I'm diabetic, and when I tell them they can't believe it. Is it a chronic condition, yes, but IT IS a manageable condition, especially when you are equipped with the knowledge and no better place to start then on this forum.

Hopefully you get a CGM, as that definitely makes life a lot easier.

 

[Diakat]

Not the end of your life or indeed hers! It’s just different. She’ll still catch the bus with her sister. However hard it seems now - things will get a lot better.

 

[Paul520785]

Hi - it will get easier.
As T1 for over 65 years - my only advice is not to hide or over advertise the fact of being a diabetic >>> Just make sure someone you are with knows you are a diabetic.
My motto from the age of 11 is - I can do anything that any one else is doing but I take my sandwiches with me!

 

[Daibell]

Hi and welcome. It sounds like your daughter is coping well with the right attitude. Look around the forums on this site for the ones dealing more with children so you can compare notes with other Mothers.

 

[shelleyh]

Hi
I was diagnosed with T1 at 13 years old but things were very different back then. ( 41 years ago!) Once you and your daughter get used to recognising low blood sugar/ hypos it will become easier. She will have her own routine and get to know what she needs to eat or drink to increase her blood sugar levels. For me,at the age of 13, it became part of my life and I adapted quite quickly. I can honestly say apart from wanting to join the Police in the 1980’s, diabetes has not stopped me travelling, working and enjoying my life. Give your daughter the chance to deal with her condition as independently as possible but with a watchful eye from mum.

 

[beckysalvage]

Hi @Zande,
Again I am talking from a child's point of view, but I was diagnosed aged 3.5 and my parents helped me with my injections etc throughout primary school (it was easier in some respects then as I was only on 2 injections a day). At secondary school, I started carrying and doing my own insulin. Like everyone has said, I have not let diabetes run my life (I am a volcanologist so I study volcanoes for a living; I climb them to monitor them in all sorts of environments; I spent 2 years working in Costa Rica; and I am currently based in Canada!) Yes, your daughter will have to learn to manage her diabetes herself, and it is not always easy (being a teenager isnt anyway, let alone when you are "different"). But things have come a long way in terms of technology, CGMs, pumps etc which make it easier to live a "normal" life.

My advice would be to encourage her to tell people she is diabetic; learn to recognize the symptoms of a hypo (which change with time for some people!); but do not let her think there are things she cannot do in life! There will be times when things don't go so well, and she doesn't manage her diabetes as well as she should (going to university for the first time was an eye-opener for me and my mum!) My mum was, is and always will be such a support system for me... she never judged, always listened and always tried to help in any way she could whether that be coming along to doctors appointments or talking to teachers about the condition. But she let me manage my condition myself, and I know this must have been hard for her at times. In the end, its worked out for the best, and now I am confident to manage my diabetes completely independently.

I would also recommend setting up a meeting with the staff at your daughters school to discuss her condition, how she is going to manage certain things at school such as insulin (where, when and how etc.), and so that everyone is aware of her symptoms of a hypo.

You and your daughter can do this!

 

[Glucobabu]

Stick to these forums. There is a mine of experiences and advice here. With the medical professionals more up to date and wonderful new technologies life will soon become pretty “normal”! Wishing you and your daughter all the very best.

 

[La_Loca]

My son was diagnosed a month after his 18th birthday and a few months before his A levels. I remember him saying that he wouldn't be able to do anything that he wanted to do in life but, like others have said above, I reassured him that he would still be able to do everything ... but just with a bit of planning beforehand. He is now at uni, goes off to music festivals and has travelled abroad with his friends. I am really proud of the way that he has just got on with life. To be honest the last few years have been a bit of a roller coaster for me. I used to be on high alert all the time but, as my son has adapted to life with diabetes, I have calmed down too. I don't think I ever stop worrying though but try not to show it! I think Paul520785 has a brilliant attitude. Make sure your daughter's friends understand what to do in case of a hypo. The school should invite you both in to write a Personal Care Plan (PCP) if they haven't already. Insist that they confirm that all her teachers are aware of her hypo symptoms in particular. This forum has been great whenever I have been worried. You are not alone.

 

[vipper11]

Hello
As a parent my son was diagnosed with T1 eight years ago at the age of 7 year old and it was exactly challenging for me as you are rightly experiencing. I had no idea of what diabetic was or what T1 meant by then. Mostly we did not have any diabetic center or educational support like in UK but only after searching in websites/Google and joining this forum we were able to learn more and helped us very much. My son is now managing everything on his own, But sometimes I have to check on him just to make sure he is keeping well. The rest is all fine, we are doing everything that we used do before no much of change in our day to day life. He is controlling Glucose by using Cab counts. We travel to different countries too and only challenge that we have experienced in first two days is when the food is of different kind that may take time to adjust but it turns to be normal in a short time. Don't worry you will be fine but may need little adjustment for what you may want to help in keeping an eye on her, or a simple phone call when you are not around to remind her until she is able to manage on her own. Check on at night to avoid Hypo and will be fine after start using CGM.
We are doing well and happy, so you too will be fine and wishing you both a happy life,

 

[vipper11]

I forgot to share about school, she has to carry her blood glucose monitor if she does not have CGM, as well as glucose Tabs for help her when experiencing Hypos. School should also know about her condition so that they can help when required.