Generally terrified -3 year old just diagnosed type 1 diabetes- help!

[Snoopy10]

In shock at the moment. Packets of needles and books on carbs have taken over my horizon. Does anyone have any tips on surviving this one and a hopeful prognosis for the future in one diagnosed so young? Also how long if ever do they stop being terrified of every injection and when do you stop panicking about giving them snaks?! Thanks in advance.

Oh gosh, how scary for you. I don’t have any info on type one but I do know that children adapt far quicker than adults and you just have to go with the flow. I think don’t build up the injection too much, don’t make a big deal of it. Children take their cues from the parent so try to be matter of fact about it. Poor little thing, such an awful thing to go through but I’m sure your dc will be fine.

I'm so sorry to hear of your son's diagnosis. It will get easier and sometimes you will forget that it isn't normal. There is good support on Facebook (I recommend UK CWD AG). Are you home from hospital? Xxx

And yes, the management is very intense these days which is hard, but it does mean a massively improved prognosis.

No direct experience but has anyone mentioned about pumps to you? A friend of mine who is type 1 and her young son have both just got them, I believe she doesn’t have to do any finger prick tests and no injections now. Or maybe fewer finger prick tests and no injections.

Don't worry about learning more than you have to for now. It's overwhelming at first. But know that there are technologies out there which help a lot and are improving all the time

This sums up how you might feel

Thank you so much for such quick responses, good not to feel alone. Lo has been so brave, she hates needles but is obsessed with doctors so it has been a rollercoaster of highs and lows for her in the hospital. I asked about the pump Viva, but they want me to start out with standard way. The responsibility of being her pancreas is overwhelming. You are right about not building up the injection Cambridge but it’s so hard as she is only three and had a very rough time in the hospital during the blood tests (they couldn’t find a vein and after trying all the numbed areas went for one that wasn’t). She is so scared each time I hate it. T13 I am heartened by the technology and hopeful that catching it this early will mean she doesn’t develop secondary problems but I know so little about it. Thanks again can’t quite take it all in.

You must be completely overwhelmed - all I can offer is this: I was much older when diagnosed (14), but now, nearly 40 years later (and with three gorgeous, healthy children!), have absolutely no complications whatsoever (touch wood). The technology and advances now are incredible - and she has you. Many don't have that support - feel free to PM if it would help but I'm sure parents of little ones with Type 1 will be along soon!

Snoopy10 - My child was only 18 months when he was diagnosed. It is hard, and the best way that I can describe it is that you actually go through a grieving process.
It's a huge responsibility and the hardest thing I have found is that there is never any let up. There isn't a break at all from this disease. You need to always be aware of what blood sugars are, what they have eaten, how much exercise they are doing and how it affects it, how to cope when they are ill etc. I think people who haven't experienced it will never "get it". Not even close family really.
There is a saying that "diabetes never sleeps, and nor do the parents" and I often think that's true! If it's any help though, I think in many ways it can be harder for the parents than the child.
A big plus of being diagnosed when younger for us was that it's all he has ever really known, and so he just accepts it and gets on with it in a way that I think other children don't manage when diagnosed later on.
You mention being diagnosed early perhaps meaning not as much chance of secondary problems. Sadly this isn't the case as the longer you are diabetic the higher your chances are that you may suffer from problems in the future such as retinopathy etc.
There is loads I could write, and reading back this post perhaps comes across as being rather negative. I truly don't mean it to be. I'm just acknowledging that it is really hard work to be honest. Of course the support around you makes a huge difference. We had very little. (family in other countries) and it did affect us hugely.
My child is 19 now and is doing really well. When he was first diagnosed we were so hopeful of a cure and were told there would be major advancements in technology over the next few years. Honestly though, very little has changed at all which does make me sad. He still has several injections a day and finger pricks at least 8. He does have very good control though.
Be prepared for lots of people to think it's no big deal and tell you that their Granny has diabetes. The majority of people really only know about type 2 and the negative press it gets. It will become frustrating at times explaining that your child was never fat and didn't eat too many sweets etc!
If you have any questions, ask away or pm me.

My son was diagnosed in April, a bit different as he was 11 so could understand more.
It seems so difficult at first but honestly within months it has become second nature to us, just our new normal.
For injections let your LO be involved, let her twist the dial maybe? Or check the dose? We find thighs or buttocks hurt less.

Facebook has lots of good support groups with parents and children your daughters age.
Parents of children witb type 1 diabetes uk
Diabetic mums UK (mums with T1 kids)

I am off to bed now but if you have any questions you can PM me ans I will reply tomorrow.

Not my child but I've been diabetic for over 10 years now. You do get used to or fairly quickly I think but I never stops. Consider asking your team about the libre if finger pricking is a problem. It means less picks and you can monitor her in her sleep without waking her. I thought I know my diabeties pretty well but this has been life changing tbh

I second the libre, so much better for young children not to have to prick their finger all the time. Unfortunately not many trusts are funding it (average cost ~£100/month) but it's worth asking about.

Not my child either, but I've been type 1 for 25 years now, and you do get used to it being constantly in your mind to whatever extent, but I'm another one who's found the Libre a game-changer. Being able to see what my blood sugar is doing and where it's going so I can make adjustments before it gets too high or low means I feel in control of it, rather than being controlled by it. And not having to finger-prick all the time....can't say how much of an improvement that is!

I've got approval for it on prescription because it's made my control so much better, but in my area it's not GPs who can authorise it, but the diabetic specialist, so keep asking till you get an answer. Good luck.

Oh, and I totally get that your little girl hates the injections - nobody likes them! - but if you have the pens, the needles are very fine and short and the key is to do it quickly so you don't feel it so much. Just whack it in. Honestly, it's the best way.

On the injections, my son was very traumatised by the blood draws and cannula for the drip at diagnosis. The dehydration and the effect of the condition pre diagnosis means that it is more difficult for the nurses to find a good vein. He was able to start injecting himself while in hospital (age 8) and that element of control helped, but larger things like pump or cgm insertions and blood draws (not finger pricks) were very difficult for him to start off with.

As your LO is so little, she won't be able to inject herself yet but as NachoAddict says, maybe start thinking about different ways to involve her - e.g. putting the test strip in the meter, pressing the button on the lancing device (finger pricker), counting with you when doing the injection (we used to count in different languages). She can try to guess what number she is going to be on the BG meter. There is a thing called a buzzy buzzy4shots.co.uk which can help distract some children.

Also, I'd say treat this like potty training - sticker charts, a favourite book or game on the phone while the injection is happening, a chocolate button afterwards. I know you will be worried that this will set you up for problems with her expecting a reward for ever, but that's not my experience. You just need to do whatever you need to do to get through this, so don't make it any harder on yourself.

My lovely online friend was diagnosed at about the same age as your daughter, more than 60 years ago, when the tools that we have now to manage the condition just didn't exist. In the past few years he has been climbing Mount Kilimanjaro and trekking through Peru which is impressive for someone in their 60s, let alone someone with type one. Prognosis was much worse in those days. This is his story. www.diabetes.org.uk/your-stories/type-1/ive-lived-with-type-1-diabetes-for-60-years

Also you might want to check out Roddy Riddle who does all sorts of extreme endurance events. My son interviewed him earlier this year vimeo.com/214374612

Please do PM me if you would like and I would definitely recommend the facebook sites for support. Huge hugs.

With the libre, it is expensive but if you can't ger ir on perscription (we can't yet) ypu will be entitled to DLA which will cover the cost. You can claim regardless of income. You have to wait 3 months from diagnosis but you should get middle or high rate for such a little one.

You will likely be eligible for middle rate DLA - lots of people use this to fund a CGM such as a dexcom. If you move to a pump in future the medronic 640 will work alongside sensors called enlites and low suspend when the blood sugar is dropping - reducing hypos and severe hypo risk. The libre is good but it will not alarm high or low unless you add other devices to it and nightscout.
Dexcom will read to your phone and alarm high or low blood sugars.

Please know that the injections don't hurt. They aren't like a vaccination. Cannula changes for a pump do hurt a little but they are only once every 2/3 days so it's kind of offset.

The other option is an iport which is made by Medtronic. You put it on like a pump cannula and inject through it so it is again only one needle every 2/3 days. Toddlers are tricky because they graze so you could end up giving a lot of injections. The iport may be a help pre pump. They will also prescribe Elma numbing cream if that might help. Not for injections as they are so frequent but for cannula or iport changes.

The FB CWD page is very helpful but there is a LOT of information there.
I recommend the book 'think like a pancreas' for a starting point and you can dip in and out of it.

It is tough and unfortunately I don't think it will ever be cured as such. There is a guy in America who is working on a bionic pancreas and they also have the medronic 670 over there which adjusts blood sugars to keep in a target range if you have it in auto mode. The bionic pancreas is interesting as it releases glucagon as well as insulin but it is this part they are having difficulty stabilising. Unfortunately all these devices currently are massively inferior to a functioning pancreas so you just have to do the best you can.

Ask your hospital about DLA if they haven't already broached it, about iport if you think it may help and make sure you have glucagon for emergencies (which hopefully you will never need).

Good luck xx

Hi. Another one here just to say yes, it's enormously hard. My little one was 4, now 6 (and recently diagnosed coeliac in top), and I remember coming home from hospital and feeling completely overwhelmed - the responsibility of looking after him felt too much and I didn't feel capable. But you know what, in hindsight, it became our "new normal" so so quickly! Injections were far less traumatic within just a few weeks and we felt completely on top of it within 3 months.
Unfortunately, it doesn't stay that way, diabetes does always throw curve balls to mess with your routine and care but we feel equipped to deal with them now.

LO is now on a pump, he asked about it this summer when on holiday and away with friends as I think having to inject made him feel so different, when at school it's very much just part of his routine. Pumping is a whole new level of hard work but a million times better for little ones, and fantastic for giving them back some freedom over when and what they eat. My little one loves it, and has already marked "pump day" on the calendar so we can celebrate the anniversary next year.

My advice would be to move onto a pump as soon as your team allow it. But in the meantime, never feel you can't call them. Call your nurse as often as you need and use the forums others recommended above - there's no such thing as a stupid question!

And finally, see what local groups there are. I posted on a regional forum early on and met up with a mum with a child the same age and can't tell you how helpful it was. For him to see he wasn't the only one, and for me to talk in person with someone who got it. We've become good friends and are always sharing pics of meter readings, how the night had gone, asking each other's advice on carb counting...

Take care.

Your messages have been amazing during a very painful and daunting couple of days. Thank you all so much. Woo Woo thank you for the detail about your children, I was worried it would make a difference to her fertility. Lovely to hear yours are doing so well -
Yes peoplearepeople, I have been told, 'but you hardly give her any sugar', Im sorry it has been so tough. It is worrying enough when they are so little anyway.
Thanks for the tip about DLA Nacho Addict, I have now asked and they will follow up as I have decided to get the Dexcom G5 thanks to the detailed information from WaitingforSunday - Iccle and its curtains, I'm glad to hear it was life changing, the finger prick seems so harsh just to check up - Abbey44 it's true you just have to get on with it the jabs though -
T13 mum - thank you so much for the links to both your friend's and your gorgeous little boy's inspirational articles. My little girl has watched his interview a few times, just fascinated by his grown up presenting! - Prak your lo was 4 - how did you cope with nursery or school? I feel like I will never leave the house again! She won't let anyone but me do the jabs at the moment. I will look up local groups once Christmas is out of the way. That sounds like a way out of isolation especially as I am only recently separated from my husband (We are still good friends but it is extra challenging alone). This morning is the first morning she woke with a reading above 4 so the nights are very worrying.
Again thank you all so much for taking the time to relate such detailed and useful information. Wishing you all luck with your ongoing journeys with diabetes.

Amazing update - what a strong amazing mummy you are.

Good luck to you and your daughter & remember to look after yourself too.

There is lots of support out there for your little one and you, which is worth exploring in the new year.

Merry Christmas

Just popping on to add my support. My DS was diagnosed at 5, is now 20 and living life to the full at university. It is a shock and a worry, but you will get through. The FB groups are great support and there is always someone there day or night.

The Dexcom G5 changed our lives. If I could nominate a piece of technology for a Nobel prize is would be that. Happy you are going for it.

Enjoy Christmas as much as you can. You sound like you doing a great job. It IS really painful and daunting, but you will get through this. And yes, be kind to yourself.

Thank you for the kind words about the video and my son will be really, really pleased to hear your daughter liked it.

Thanks for the support Christmas and Tangarine and yes T1 the film was really great. DC has been really brave and levels are low - low - low over holidays. The hospital have now told me her hba1c level has come back as normal! Apparently they are waiting to see if an anti body test has been done as they say there is room for doubt! Don’t know what to think now. She had almost no ketones - no more raised than you could get with virus anyway. Did everyone here have anti body test? DC had no symptoms at all except over sleeping one morning. Did your dcs have symptoms - it may be that they have caught it super early but nervous of mis diagnosis.

Can you let us know what happened at diagnosis? What were the original symptoms? High blood sugars?
How low are the lows?

My children have a different blood sugar condition, but have some working knowledge of T1 too.

Have been a T1 diabetic since I was ten years old - had a gorgeous baby last year as well. 😊

Had pretty terrible control through my teens, but other T1s I know who were diagnosed earlier than me did much better.

Couple of things to help: the dexcom G4/G5 continuous glucose monitor is a game changer if you can afford it. (The sensors last much longer than they say, plus check out the alternative app to the official Dexcom one for lengthier use)

Use a ice cube to numb an area before you inject if the pain is bothering your little one. I remember doing this for several months when I was first diagnosed!

Happy to chat via PM if I can help at all.

Original symptom - only one - was that she just kept going back to sleep when she normally wakes up at 6:00am I called 111 when she was still sleeping at 9:30 - no temp no illness at all. I was just worried as it wasn’t normal. They called back and sent me in at 2:30 in the afternoon to check for a virus. By 12:00 she was up lively eating normally and herself. I nearly cancelled but wanted to check. They did a urine test which showed ketones. No sugar. The blood test showed blood of 14. They sent us to have more blood tests then gave her Lantus and sent her home. She woke up with bg 4 next morning then hypos next two days 3.9s and has never been over 5.8 and sinks to 4s within hour after meals. Have to give her extra carb every night. Her hba1c was 32.