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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Type 1 Diabetics - please tell me happy stories

33 replies

Portabella24 · 18/11/2015 08:41

Posting here for traffic - sorry
My DS12 and I have just found out that he has Type 1 diabetes - fasting blood sugar of 15 and after eating so high the monitor couldn't measure it (over 33). I couldn't sleep last night and googled too much and now I am so scared.
He is active and lovely and really trying to be stoical while I am being a complete failure and struggling to hold it together.
I know that lots of MNetters have T1 diabetes and it might be illogical because everyone is different, it would be really comforting to know that live can go on as normally as possible.
I know I sound mad but I would be grateful for good news stories just now.
thanks in advance

OP posts:

BalaRua · 18/11/2015 08:46

Not me but my uncle, diagnosed at 11 and now almost 50, has a brilliant job, a wife and two teenagers. He can travel (and regularly does with his job), he eats well and exercises, can have a tipple if he fancies and leads a great life. :) so sorry your ds has this diagnosis but he can have a 'normal' life so don't worry too much :).

Flossyfloof · 18/11/2015 08:49

I can't give you a personal story but can tell you that I have taught a number of children your son's age who have managed their diabetes very well and with so little fuss that unless you knew, you wouldn't know, iyswim. I organised a whole school Inset session on it which was really useful.
Try to get as much information as you can, involve the school and make sure they know what to do if he becomes unwell in school time. I think you are probably in shock but am sure that things will settle down for you in the next few weeks/months.

AmyGDalae · 18/11/2015 08:53

I'm in med school. Several students in my cohort have type 1 diabetes. They are managing it well and are living completely normal lives.

pickledsausage · 18/11/2015 08:57

My husband has it too, diagnosed at 13, now 38. It may be his attitude to it but it's not seen as a big issue by him and therefore me either. It's very well managed, he travels monthly for work, has a great job and normal active social life. Technology/meds are improved all the time too so chances are by the time your son's by husbands age it will have an even better outlook

Original poster

Portabella24 · 18/11/2015 09:02

Thank you so much to everyone who has responded so quickly - I am very very grateful.
So, maybe IANBU for being worried now but IABU for not thinking positively (desperately shoehorning in to topic)

Thanks - you're brilliant!

OP posts:

Smoothyloopy · 18/11/2015 09:43

OH diagnosed at 12. Leads a perfectly healthy life he plays sport & trains a junior team in the same sport. We have 2 DC & I can't think of anything he can't do because of his diabetes. He goes to all of his regular check ups though & I think this is very important.

strayduck · 18/11/2015 09:50

My husband. Diagnosed at 6. Leads a pretty normal life, just a few extra check up appointments to go each year. Hasn't stopped him from doing London marathon and compete I. Triathlons. Even did an iron man in under 12 hours. He did say he was in hospital a few times in his teens as it was harder to stabilise his bloods whilst growing so much however this was before insulin pumps were common. The only thing it has stopped him from doing is join military or police force.

Strangertides1 · 18/11/2015 10:10

Hi. My dh has had type one since he was 9. He lives a normal life as well. He's figured out if you keep your cabs low and go easy on sweet (he gets sugar free sweet from Amazon), his bloods stay between 4-10. Give this a try with your ds to get his reading lower. X

jay55 · 18/11/2015 10:13

My cousin was diagnosed at 4. She's now a nurse in a London hospital and has a very active social life.

LadyRivers1 · 18/11/2015 10:20

My daughter was diagnosed at 5. She's 9 now and it's become part of life for us. She plays netball, football, swims and has lots of friends who are totally understanding and accepting. She is a happy girl who just happens to have a dodgy pancreas. It's a massive adjustment and to be honest with her getting it so young she doesn't know any different, I can't imagine what it would be like if she got it in her teens. I made the mistake of molly codling her at the start but soon learned that's not the way to go, T1 is here, it's life now and we have to get on with it. One tip though - stay clear of sugar free sweets and diabetic sweets - laxitive effect anyone . Massive hugs and feel free to pm me. Diagnosis is so overwhelming and it's such a steep learning curve, there's so much to take in so soon xx

LaughingHyena · 18/11/2015 10:23

I was diagnosed about 5 years ago. Went to the Dr because I was feeling so so tired and thought I may be a bit anaemic, so it came as quite a surprise. There was a steep learning curve getting used to all the new routines.

24 hours after starting in insulin I felt so much better than I had in months. It really was that soon.

I hit a really rough patch 4 or 5 months in, for me that's when it really hit that this was forever and the bits I was still finding hard felt overwhelming. The team at the hospital were really helpful though.

The folks on www.diabetes.co.uk/forum/ were really helpful too, especially when I moved from injections to a pump.

Also www.carbsandcals.com/ I have both the book and phone app, makes calculating carbs so much easier, especially when eating out.

Givinguph0pe · 18/11/2015 11:27

I was diagnosed aged 10 - age 33 now.
Being pregnant has been the toughest bit as it affects sugars hugely but your ds won't have that at least!

It is tough, at this age it's probably tougher for you than for him. Jdrf are a good resource and I would suggest looking at insulin pump if your son is open to the idea. It is hard work and it gets me down more now than it did when I was younger but you just have to get on with it because there's no other option.
The treatment is a lot better than it used to be, hopefully there will continue to be advances as the years go on.
Good luck, please feel free to pm me if you have anything you want to ask. I know my mum found my diagnosis really difficult.

ZoeTurtle · 18/11/2015 12:26

I was diagnosed just before I turned 11 and I'm now 26.

It took a long time to get me sorted because of the dawn phenomenon, but I'm now on a pump and my HbA1c is at 6.7%. I have no lasting ill effects from the many years I had levels of 10% and above (though obviously I'm not advising it!)

Is he on a pump and, if not, are you pushing? The NHS seem to give them out more freely to children than adults, though you will still have to meet certain criteria. It will give him much greater control and socially it's easier than having to pop out for injections all the time.

Diabetes doesn't affect me now. It's part of me rather than an inconvenience. He will be fine!

AgnesDiPesto · 18/11/2015 12:44

Ds2 was diagnosed at 8. After 6 months he got moved onto a pump and that's made everything much easier as he only has to change it every 3 days instead of 6 injections a day and can eat what and when he likes more. I have another child with autism and in comparison the T1 care has been amazing, there's a clear plan of what needs to be done, evidence base, best practice, training courses, the nurse has been into school etc and trained everyone, great follow up etc. When DS3 was diagnosed with autism we got 1 leaflet with an out of date parent group on it and no one contacted us for 8 months. So of all the things you can get I have to say the NHS care we've had for T1 has been amazing.
It does take some adjusting to. We've all lost sleep getting up to test at night etc and DS has phases where he gets fed up. As so many people have T2 there is a vast amount of research going on and within 10 years there will probably be an 'artificial pancreas' which will continuously test and deliver insulin and sugar. There are already prototypes being tested. Also research into testing via the skin eg fake 'tattoos' that can test blood sugar through skin and can be 'scanned. There's lots of reason to be positive that technology is being developed to make management easier. Phone apps for carb counting etc.
DS just moved to secondary and that's meant having to let him be more independent with remembering to test etc. He's not allowed a phone in class so wears a Fitbit flex which vibrates at set times to remind him to test. The advantage of a Fitbit over a watch alarm or phone is its silent and there's nothing to distract him in class plus you can set alarms for a whole week in advance so for eg I set an extra alarm half an hour before sport so he remembers to test or have a snack.
You can also apply for Disability living allowance (DS doesn't consider himself to have a disability but we get some money each week which keeps him in lucozade and cereal bars and pays the insurance on his pump).

Foxyloxy1plus1 · 18/11/2015 12:50

One of the boys I taught had T1. He was diagnosed at 12. His dad came into school for about a week at lunchtime to give him an injection. After that he did it himself and was fine. A few months later, we took him on a school trip to Holland- no problem and it was an active trip!

HappySeven · 18/11/2015 13:02

I heard about these people a little while ago and found them inspiring. It doesn't makes life easy but it doesn't mean you can't do things.

Original poster

Portabella24 · 18/11/2015 21:30

I have been at the hospital today without any sort of signal and this has been great to read. Thank you to everyone - I am going to print it out for my DS to read tomorrow.

And especially, to LadyRivers1 and Givinguph0pe thanks for the offers of PMs - I will take you both up on that if that's ok when we are home and when I'm sure the questions will pile up.

OP posts:

Flossieflower01 · 18/11/2015 21:40

My son (13) was diagnosed in July this year. It was a massive shock and took us a good couple of months to get the hang of it all but he's now doing brilliantly. Get started on carb counting as soon as possible (we self taught as the hospital didn't offer us a course until two months after diagnosis!!) as it will mean he can eat what he wants, when he wants. The ratios will keep changing- ours are different in term time and school holidays, even weekends are different to weekdays- and keep testing often (we do at least 8/day, often more) as it will give you more information on how different foods affect his levels and enable you to correct hypers and hypos more quickly. There are several really good Facebook groups- CWD and parents of children with type 1 in the UK for example. There is always someone on there even at 2am if you have questions.

If it's any encouragement my son has done a scout overnight camp, a week with grandparents without me, and is now booked to go on a school trip to France for two night in the new year so even at this stage four months after diagnosis it isn't stopping him from doing anything except scuba diving (had to be postponed until he's had no hospital admissions for a year!!).

Good luck

feckitall · 18/11/2015 21:53

DD was diagnosed at 14 now 23...she is a p/t PT instructor on top of her day job..lives a normal life..goes out and socialises normally for her age and did so through teenage years ..does all that a 'normal' woman does now.
We had a few ups and downs in the early days but on balance all ok now..

feckitall · 18/11/2015 21:54

Oh and the diabetes team at the hospital were brilliant...even went to her school to speak to the staff on how to help her manage it..

LimitedSedition · 18/11/2015 21:57

OH diagnosed at 2- his mum used to have to use glass syringes that were washed out!

Nearly 40 now and relatively healthy (only had 1 ambulance callout in 38 years)- his pump has helped a lot.

DisgraceToTheYChromosome · 18/11/2015 21:59

I climbed with a friend who injected while hanging from a bolt halfway up an E2*. Which was cool.

*If you know what that means, you'll know how fit he is.

Tangarine · 18/11/2015 22:12

DS1 was diagnosed aged 5. I waved him off to University a month or two ago. He's a half marathon runner, rower and rugby player.

You will soon find your new normal - people with T1D can do pretty much anything, but sometimes it just takes a bit more planning/support from school/diabetes team at hospital.

Has anyone recommended the UK Children with Diabetes email/facebook group yet? They have saved my sanity many times over the years - lots of good advice and listening ears.

Best wishes to you and your DS

feckitall · 18/11/2015 22:17

Oh forgot.she got her karate black belt 2 weeks before diagnosis..we wondered why she had the shakes after the exam! :P she also reaches on a adhoc basis now...

Salmiak · 18/11/2015 22:25

My dh. He was diagnosed as t1 in his early 30s. I met him when he was 34 and didn't even realise for the first few months of dating that he had diabetes - he was normal, happy, healthy and lovely.

More than 10 years later we have 2 dc, but he is still normal happy healthy and lovely.

He attends all his health checkups regularly, has never needed an ambulance call out and is really well controlled.

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