3yo DS diagnosed with type 1 diabetes. Come and share your experiences.

[Xnic]

As above, we went to the docs yesterday as I was a little concerned, only be be rushed to hospital and diagnosed with this. We've just been allowed home now and it's been such a worldwide of emotions! I have cried so many tears for my beautiful baby boy. I'm a lone parent, i work ft and I feel overwhelmed with sadness and with the bucket load of stuff that we have come home with. Has anyone got any experiences to share? I'm feeling a little more positive right now than two hours ago but I feel all over the place. he was so brave in the hospital, has never cried over the injections or pin pricks, me on the other hand... Any views will help, I need to get this in perspective.

My dd2 was diagnosed with type 1 a month after her third birthday in 2012.

The first few weeks are difficult I won't lie, there's a lot to learn and get used to. It does get easier though. Do you have support from your hospital? A good dsn is a godsend.

Anything you want to know just ask x

I'm a childrens diabetes nurse- get yourself on the website and forum "children with diabetes uk". They can advise best hospitals to go to - yes, some are better than others and you do have a choice! Also you may find that with your son being so young an insulin pump will be much easier to manage his blood glucose levels. Hang on in there, this is the hardest time but I promise it does get easier- go on that website and they also have a fb page and start talking to other mums xx good luck!

Yes agree that the cwd fb page is great

My dd was on mdi for 18 months before she got a pump, I was nervous but it is so much better.

Thanks for replying. They have talked of the possibility of the pump a few months on from now. The hospital seem good, I had a visit tonight for his bedtime dose and the nurse is coming in the morning too. How is your daughter now hedgehog, did she cope well with the changes? Is she at school now?

So sorry to read your post. My DS1, now 17, was diagnosed at the age of 5.

The CWD forum was a godsend for me in the early days, I felt very isolated and alone. It is tough to start with, but you will soon get into a routine. Be kind to yourself.

At first dd was a bit unhappy and would refuse to eat after injections so for a couple of weeks she had food first and insulin afterwards but soon got used to it.

Dd was on novorapid and lantus to begin with but then changed to novorapid and levemir. 4 jabs a day at first but ended up seven a day just before changing to the pump. She also has a dexcom continuous glucose monitor which is absolutely amazing and we wouldn't be without it.

Initially pre school was difficult as dd had just started then got unwell and they needed a lot of training and support. She is now in reception and doing well with great support from the school.

Thank you tangarine, how is your DS now? I will definitely check out this forum. I just never realised how much was involved, I thought it was one injection a day, I have a lot to learn!

I'm glad she has support from the school. My DS goes to nursery three days a week and this is a worry, I will go in on Monday to speak to them. He is on novorapid and levemir too. Four to five jabs a day for now they've said. His blood sugars were a little bit high tonight but they've said not to panic in the early stages as we're getting used to it.

Xnic - DS has had his ups and downs over the years, the odd challenge in his teenage years but is out the other side and a lovely young man even if I say so myself .

He is very sporty, which to some extend helps with controlling his blood sugars. I always took the view that diabetes was an uninvited guest in our home, and that it was not going to stop DS doing what he wanted, even if sometimes it meant a lot more planning/sleepless nights with the worry of it all.

There is a lot to learn but you will soon get there. Feel free to ask any questions. And don't worry too much about levels in the early days - better a bit high than too low at night until you are more confident.

It did take a while but once pre school were trained they were ok and then the same with school. I wrote them out lots of notes, went in a lot and there was hospital training etc.

At first it does seem overwhelming but it very quickly becomes just part of each day and like a pp said diabetes is just like an "uninvited guest" in the house.

I've had type 1 since I was a child so I can't see it through your eyes but I can see it from your DS's point of view.

In a nutshell, it really is no big deal to me now. Sure I sometimes have bad days, hypos and days when it gets me down, but mostly I almost forget it's there as it has become completely normal to me.

I'm 40 now and have survived childbirth, uni, drinking and much more - completely unscathed!

I'm not trying to play it down, but it was all definitely more traumatic for my mum than it was for me!!

Thanks for your reply, sorry I haven't been on for a while. Having no prior experience of this, it really does help to see it is not the end of the world. My DS is being amazing, no problem at all having the injections so far. He is far far braver than me!
He seems tonight like he is coming down with a bug, so I'm really hoping its just a cold.
His numbers are all over the place at the minute, and he has had around 6 hypos this week
We're seeing the nurse Friday for proper carb counting education and a new meter.
Do you guys use a pump and if so, have you found this better for yourself/your children? Thanks again all.

Sore point Xnic - I would love a pump but keep getting turned down because my control is too good. It really winds me up! They are better at giving pumps to children though.

If he's getting a cold it's normal for his levels to be all over the place. Usually if i'm ill i'm high, then when i'm on the mend I tend to go low. Sometimes my levels are all over the place for no good reason!

Is he on novorapid and lantus?

Hi paddy, he's on novarapid throughout the day and levemir at bedtime. We have the carb counting meter now and it's really made a difference to his levels, seem to be evening out. I only ask about the pump as he is getting more resistant to having his injections as time goes on, suppose the novelty has worn off.
It's really good that your control is too good though.
I'm dreading easter with all the chocolate about!

Hello there, so sorry to hear of your son's dx. My son just turned 15 and has had diabetes for nearly 8 years. It still hS its challenges, but we feel more able to manage it. He injected for a few months, but things changed for the better when he got his pump, and better yet again when we got continuous glucose monitoring.
Those cwd parents were a godsend and helped us no end, particularly in the difficult early days and through the odd remaining hard time - they are friends for life.

Good that his levels are stabilizing Xnic. I find novorapid really good, switched to lantus instead of levemir because I was having too many hypos.

Try not to worry about Easter. Remember, the no sugar for people with diabetes is a thing of the past. When I was diagnosed it really was a case of no sweets, ever again - until thankfully the rules changed!!

Some chocolate is fine, especially if he has it after his meals, just so long as he takes enough insulin to cover it. If I randomly want some chocolate or a cake I have some, but I need to take another injection to cover it, and it then comes down to whether I can be bothered to do that, or whether i'd rather do without / wait til dinnertime.

Reading parents comments on here are always a really eye opener to me. When I was a kid, never in my wildest dreams did I even consider that my mum might have been upset / found my diagnosis hard - I guess she must have done a good job of hiding it from me!

I hope I do a good job of hiding my worries! He's had his mmr injection today, he didn't even flinch! I've been reading up on cgm, is this something you've done paddy?
What are both your experiences of severe hypos/how many have you had? This is something that really scares me, I've been reading about night time hypos online do you think I need to test bloods during the night to be safe or is this not necessary?
How does your son find schools brambles, has he had any difficulties?
I really appreciate all the posts from everyone.

I have lots of hypos, but I do have pretty good awareness. Having said that I can be less than 3 and still functioning pretty normally, nobody would ever know. Other times I've been eg 3.2 mmol/l and have been talking complete rubbish. I have to be careful when I've been drinking but that' not going to affect your son for a few years :)

I sometimes go low at night. My eyes just ping open and there'd be no hope of getting back to sleep. I always keep a Lucozade at the side of the bed. If I've been exercising / drinking I set my alarm to do a 3am test but not always.

Thing is, it's all so routine to me now that it's normal. I know it's not quite the same as going to school but going to work, people know that I have type 1 and that I have to eat regularly. They know that I sometimes have to eat in class (i'm a teacher) and that break duty is a no-no cos I have to eat. I used to do my insulin in the toilets but now I discreetly do it in the staffroom.

What is your DS bg level before he goes to sleep? I think my mum always used to test me before she went to bed, and again when she first got up. I used to sleep through it!

I have looked at CGMs and pumps. Even though I think they're great, there is a part of me that doesn't want to be connected to a device 24/7. An injection is over in seconds and I can then carry on with my life! That's what I tell myself when I get each pump rejection!

It will become normal!!

The dsn has said to aim for 6-10 before bed to reduce morning hypos. So tonight it was 5.9 so I gave him a banana before he went. I hadn't even thought of night time checks until today!

That sounds sensible on all counts. As things settle down you'll get into more of a routine. Sounds like you're doing a great job :)

Your DS will still be in the honeymoon phase (I don't remember that term even being around when I was little!) so sometimes his insulin requirements will be a bit lower.

Have you met any other people in "real life" who have type 1? It's always good to talk to others who are going through it, and who are like minded. I chat to a bloke in work who also has type 1 and it's good to feel i'm not the only one. Even though both of us have had it for years there are still days when we have our ups and downs, quite literally!

If you're worried, check him when you go to bed. What does he typically wake up as?

He normally wakes up low, typically between 4-5, not hypo for 5 days.
No I haven't met anyone in real life yet, but it would be great to meet someone in the same boat.

I'm an adult T1 too - diagnosed just after my 9th birthday. I've had a pump for over 10 years and highly recommend them - I've honestly found it life changing and liberating. I would never have had children (I have 3) on MDI as my control was always too brittle.

I used my hospital's CGM for a couple of weeks during my first pregnancy, and I would love one of those too but can't afford it and it isn't funded for many people. I found it useful, but the one I used was quite old and I couldn't review patterns etc without downloading the data to a computer - afaik the newer ones let you review it on the screen, see graphs to highlight overall trends etc.

Being connected to a gadget 24/7 doesn't bother me - it's just part of me, the only thing I have to consider is the toddler getting hold of my cannula and yanking it out... hasn't happened yet, only getting it caught on the door handle managed that :o

The trouble is, self funding a pump and a CGM would set me back thousands of pounds a year.

Hello OP, you seem to be coping amazingly well with all of the complicated issues that go with this, your DS is a lucky boy.

I'm sure your diabetes nurse has this covered but sometimes in children with diabetes, we see higher than average amounts of tooth decay because of things like the pre sleep feed to prevent night time hypo etc. I just wondered if you had spoken to your dentist about preventive measures such as prescription toothpaste, fluoride varnish and the like.

Hi rue thanks for your post. How old were you when you started the pump?