Hi all. We recently received a diagnosis of type 1 for our boy. Almost a carbon copy of another thread he was in DKA by the time I took him to A and E....he was so poorly. He is back on his feet now. I love him to pieces but he is ..urm ..feral so I feel like someone is playing a game with me atm. He doesn’t understand why he can’t feed the dog his biscuits and doesn’t want to sit still. I’m catching him on a 3 still charging around like Heman. How old are they when boys start to help manage their own well-being and know when they don’t feel right? He talks and everything just is a complete and utter plonker our team have started an application for a Dexcom if anyone has experience with them they would like to share?
-
Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
Newly diagnosed T1 for my 2 year old boy......
- Thread starter Asherly
- Start date
- Status
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome to the forum @Asherly . I am sorry to hear of your son’s diagnosis.
It will be a while before he takes responsibility for managing his condition and it will obviously be difficult for him to understand what it all means. One advantage of his diagnosis being when he is so Young is that he will not know life without it.
There is a lot for you to learn very quickly, but it does get easier. A book that I would recommend to you is Type1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It explains things very clearly, is well indexed and is good to dip into as necessary.
I don’t have any experience of the Dexcom but I do use a pump which takes a bit of work at the start but is well worth it. There will be others on here who have used that specific one.
Keep in touch and keep asking questions.
It will be a while before he takes responsibility for managing his condition and it will obviously be difficult for him to understand what it all means. One advantage of his diagnosis being when he is so Young is that he will not know life without it.
There is a lot for you to learn very quickly, but it does get easier. A book that I would recommend to you is Type1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It explains things very clearly, is well indexed and is good to dip into as necessary.
I don’t have any experience of the Dexcom but I do use a pump which takes a bit of work at the start but is well worth it. There will be others on here who have used that specific one.
Keep in touch and keep asking questions.
D
Deleted member 27171
Guest
Hi @Asherly welcome to the forum. My son was a similar age when diagnosed and didn’t speak a word until he was 3 so was very hard to tell what was going on with him, often didn’t recognise hypos until he literally ran out steam. Weve been using Dexcom for about 6 months and it would have been an absolute God send to have had this when he was small (he nearly 17 now) - you’ll be able to link it to your phone and get alerts if his levels are dropping or rising and choose the level that the alarms go off at, so if he’s still charging around with a level of 3 you could set your alarms for say 5 and if trending downward give him something to prevent the lows and the same applies to high levels and correction doses. Then there’ll be the ease of not having to catch a toddler and get him to sit still long enough to check bloods. I remember in the early days I was getting up through the night to test “just in case” so it also removes the need for that knowing that alarms will wake me if he’s sleeping through anything.
Hows it all going?
Hows it all going?
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
He sounds fabulous @Asherly but I can imagine how worrying it is for you. It can help to know how responsive diabetes is so if he does go hypo and it takes a while for you to spot it you will see how quickly a correction works and then he’ll be fine and the same with hypers. It does get more tricky if he’s feeding his biscuits to the dog but you’ll build that into your carb counting 🙂
A continuous monitor will make it less stressful for you but you’ll always have half an ear on him and low level alertness. That’s tiring and you will need to find ways to boost yourself and keep yourself sane or you’ll burn out. We’re here to listen and support you through your feelings but also reach out to the psychologist on your diabetes team if you need to. They’re there to support the whole family not just your son.
A continuous monitor will make it less stressful for you but you’ll always have half an ear on him and low level alertness. That’s tiring and you will need to find ways to boost yourself and keep yourself sane or you’ll burn out. We’re here to listen and support you through your feelings but also reach out to the psychologist on your diabetes team if you need to. They’re there to support the whole family not just your son.
Thank you for responding xx
I’m lucky in that Jamie has lots of words but they hurt when he is shouting - no don’t get me Mum, I’m scared, it hurts. I know people are trying to help me by telling me he won’t know any difference but I will always remember this. Remember my baby flinching and crying out whilst asleep even though all I’m doing in tucking him in. He drops at night still we think it’s honeymoon hence the checking at night although his tresiba has been lowered again. The application for a dexcom has been done so that will help. I have been told about the pumps we can move onto and how Jamie will ‘get used to it’ Thise words are really hurting me right now poor little man has so much to ‘get used to’ already. So yeah I think now I’m mostly angry that it has happened now.... and that I’m already wishing these precious baby years away. Sorry I’m usually such a rainbow and unicorn person too
I’m lucky in that Jamie has lots of words but they hurt when he is shouting - no don’t get me Mum, I’m scared, it hurts. I know people are trying to help me by telling me he won’t know any difference but I will always remember this. Remember my baby flinching and crying out whilst asleep even though all I’m doing in tucking him in. He drops at night still we think it’s honeymoon hence the checking at night although his tresiba has been lowered again. The application for a dexcom has been done so that will help. I have been told about the pumps we can move onto and how Jamie will ‘get used to it’ Thise words are really hurting me right now poor little man has so much to ‘get used to’ already. So yeah I think now I’m mostly angry that it has happened now.... and that I’m already wishing these precious baby years away. Sorry I’m usually such a rainbow and unicorn person too
stephknits
Well-Known Member
- Relationship to Diabetes
- Type 1
Totally understandable. Who on earth wants their little boy to have to get used to having stuff stuck on him and monitoring and injections etc.
Last edited:
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
There are two aspects to being the parent of a child with any chronic illness. One is the practical keeping the child well side and one is dealing with the emotional side YOU have of caring for a child with a chronic condition. In terms of his diabetes management he really will get used to it and whilst it won’t always be easy it will become normal in your household. The distress he feels in the moment will pass and his team will help him to deal with any longer lasting issues he has with any emotional fallout for him with living with a chronic condition. The distress you feel will run deeper. As adults we tend to carry our children’s pain (and emotional outbursts) for longer than they last with our children. Your diabetes team can support you through this too. The psychologist can work with you on how it feels to be the one to do the finger pricks and injections and how to cope with feeling like you’re hurting your child.
Sally71
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
My daughter was 6 at diagnosis, and we were lucky and went onto a pump only a week later because there was a trial going on. All went well at first, she was an absolute star, then about 3 months in we had an incident where the cannula inserter didn't fire properly and she ended up with cannula and inserter both stuck to her tummy and no way of getting them off without causing pain. I decided no way were we going to drag her to A&E if we could help it, so in the end all I could do was yank the cannula plus a chunk of her flesh up inside the inserter in order to fire it again and release the cannula. I did it as quickly as possible but it must have been painful! This then of course caused her to be terrified of cannula changes (have to be done every 2-3 days) and we'd have to chase her around the house and eventually hold her down to get it done, but of course there isn't an option to not do it. We tried reasoning with her, being stern with her, bribing her with chocolate, threatening to take away something she enjoyed etc etc but nothing worked and there were many tears (hers and ours!). After about four months it suddenly occurred to her that the whole procedure would be a whole lot less stressful if she just let us get it over and done with quickly, and then because she was more relaxed she discovered that it didn’t hurt much either, and since then she has never looked back. And thankfully the problem never happened again, I think it was an unlucky fluke, please don’t let that put you off getting a pump!
But I wanted to tell you this to show you that it does get better, it might not feel like it right now, but it does! It's early days for you and you are probably still in shock, you have to grieve as well as learning everything you have to do now and finding your new normal. It's also hard not being able to explain to your child why you have to do all this, I always thank my lucky stars that my daughter was just old enough to have some understanding of what had happened to her, but young enough that she should not really remember life without it. You'll never forget, it's probably one of the worst times of your life, I will always remember the exact date my daughter was diagnosed and a lot of details of that whole week, plus the cannula incident plus several other things; she however is 14 now so has been diabetic longer than she hasn’t and I don’t think she really remembers much of the beginning. She says she remembers seeing the GP just before they sent us to hospital and she was the one who was ill but I was the one who was crying lol (I knew what was coming and didn’t want it) but I don’t think she remembers it all like I do, she has a very good understanding of it all now and just gets on with it. She is due for a new pump soon and has been researching the options with much interest.
Good luck to you and your family, it’s tough now but I hope things start to settle down for you soon!
But I wanted to tell you this to show you that it does get better, it might not feel like it right now, but it does! It's early days for you and you are probably still in shock, you have to grieve as well as learning everything you have to do now and finding your new normal. It's also hard not being able to explain to your child why you have to do all this, I always thank my lucky stars that my daughter was just old enough to have some understanding of what had happened to her, but young enough that she should not really remember life without it. You'll never forget, it's probably one of the worst times of your life, I will always remember the exact date my daughter was diagnosed and a lot of details of that whole week, plus the cannula incident plus several other things; she however is 14 now so has been diabetic longer than she hasn’t and I don’t think she really remembers much of the beginning. She says she remembers seeing the GP just before they sent us to hospital and she was the one who was ill but I was the one who was crying lol (I knew what was coming and didn’t want it) but I don’t think she remembers it all like I do, she has a very good understanding of it all now and just gets on with it. She is due for a new pump soon and has been researching the options with much interest.
Good luck to you and your family, it’s tough now but I hope things start to settle down for you soon!
Sally71
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Daughter has just come down so I asked her how much she remembers, she said of course she remembers some things from the early days but it doesn’t bother her, she might have been scared at the time but she has had to continue doing the same things ever since, and has no choice not to, and it isn’t scary any more so she doesn’t dwell on how it felt then. I asked if she could remember not being diabetic. She said a bit, she remembers being able to eat without all the faffing about which was nice, but having to wait in line for school dinners was not! (Once diagnosed she got a queue jump pass so that she could do her insulin and then go straight in)
So yes she does remember but doesn’t dwell on it and doesn’t feel traumatised any more 🙂
So yes she does remember but doesn’t dwell on it and doesn’t feel traumatised any more 🙂
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Welcome to the forum @Asherly
Sorry to hear about your little man - he sounds like a whirlwind of awesomeness!
Do be kind to yourselves over the coming weeks as you begin to adapt and adjust, it is perfectly natural to feel slightly overwhelmed at times, but we are here to support and reassure you, and you may be able to get a referral for additional support or counselling.
Sorry to hear about your little man - he sounds like a whirlwind of awesomeness!
Do be kind to yourselves over the coming weeks as you begin to adapt and adjust, it is perfectly natural to feel slightly overwhelmed at times, but we are here to support and reassure you, and you may be able to get a referral for additional support or counselling.
Last edited:
Hey me again. We have been given a Rufus bear by our team who have been wonderful - it’s def worth a mention just how fab from afar they have been so far.
Of all the names he could choose he called him Cake
Sorry no one else I’ve told has found it funny but it certainly put a smile on my face today and il take them however they appear atm so I thought I’d share ♀️
Of all the names he could choose he called him Cake
Sorry no one else I’ve told has found it funny but it certainly put a smile on my face today and il take them however they appear atm so I thought I’d share ♀️
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
Made me giggle!
What a morning so far. We had a nice day yesterday. Jamie didn’t eat his dinner or pudding or biscuits or want the juice didn’t have a nap all day and fell to sleep with a bottle of milk on a 6.something - his lowest number at bed time since diagnosis.... checked again at my bedtime he was 7.something. He refused a bottle offered and wouldn’t wake up he had had a busy day. Checked at 2am he was down to 5 something and at our 3.30 check was at a 3.5 so that was where I woke him up and brought him down. Grumpy as ever he didn’t want haribo or juice but accepted a bottle. Recheck and he is down to 3.2 but has remembered the mini donuts as I’m making him eat flying magic haribo. I let him have one so he doesn’t wake the house up as long as he Eats the space ships! Recheck he is at 20 something and wants milk and breakfast and everything he can see in the fridge but I’ve been fooled by this before so I only account for 20 carbs. Deliver dose as advised. Now Jamie doesn’t want to eat anything and wants to
Play so we play doctors on his play machine and he is at 27. Doesn’t want anything at all no bribing can get anything into him. Fast forward to doctors again on his machine he checks Mummy I check him and he is at 2.7! I give him a gel as he squeezed the juice everywhere (again) and he tells me he is tired and needs to close his eyes. Has a bottle, Recheck on his machine and he is a 4.4 and then 7.7 on his recheck to make sure he had come up further as he is now asleep. Its not even 8 o clock yet....... on the plus side his dexcom funding has been approved.
Play so we play doctors on his play machine and he is at 27. Doesn’t want anything at all no bribing can get anything into him. Fast forward to doctors again on his machine he checks Mummy I check him and he is at 2.7! I give him a gel as he squeezed the juice everywhere (again) and he tells me he is tired and needs to close his eyes. Has a bottle, Recheck on his machine and he is a 4.4 and then 7.7 on his recheck to make sure he had come up further as he is now asleep. Its not even 8 o clock yet....... on the plus side his dexcom funding has been approved.
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Oh gosh it’s hard when there are rollercoaster days. Milk is a great option for him, don’t forget to account for the carbs. We tend to use milk as the stabilising carbs after a hypo if it’s at night time. You may find that if he’s feeling off (both hypos and hypers will make him feel ill) then he’ll only want milk and not food. If you know you’re giving a lot of carbs to treat a hypo it’s ok to give him some insulin too (for my daughter it’s 10-15g fast acting carbs to treat the hypo then 10g slower release carbs liek milk or crackers free from insulin to keep her stable, if she has more then she’ll have insulin for the additional carbs). I know it’s hard when you have a kid having lots of finger pricks to then add another jab in too. You’ll get a feel for his hypos with experience and work out what he’ll accept and how much to give for different hypos. We tend to use glucose tablets or lucozade sport (or a mix of the two) as they’re quick. She hates the taste of glucogel and glucojuice.
There are days where there will be multiple hypos. Diabetes is just like that. Do lean on your team and check in with them for reassurance about what you did or tips for what to do next time. A lot of it in the early months is trial and error of working out what works in your specific situation.
Hope the rest of your day is calmer and you can get some rest.
There are days where there will be multiple hypos. Diabetes is just like that. Do lean on your team and check in with them for reassurance about what you did or tips for what to do next time. A lot of it in the early months is trial and error of working out what works in your specific situation.
Hope the rest of your day is calmer and you can get some rest.
Hey thebearcametome (is a fab name!)
Ive spoken to his team they are happy with everything, just wanted to check if I was giving a nightime snack - when I’m offering food all the time just to try and get him to eat something....it makes sense him not wanting to eat if his levels make him feel sick I didn’t know this.
It’s getting anything into him since the hunger ended that’s a problem... (unless it’s fallen off a tree or bush and not ripe....grim!)
He has had another day enjoying being 2 and having all of his energy back but has given up now bless him. His levels have been pretty stable too. As parents we have given the go ahead to start the ball rolling for a pump....although I’m very sceptical how Jamie will ‘adjust’ to it.....How did kiddies respond the the canular to start with and as parent how was it for you guys? I think we will get our dexcom training via video link because of covid and the pump won’t happen until covid has settled so just wondering what to expect from first hand experience?
Ive spoken to his team they are happy with everything, just wanted to check if I was giving a nightime snack - when I’m offering food all the time just to try and get him to eat something....it makes sense him not wanting to eat if his levels make him feel sick I didn’t know this.
It’s getting anything into him since the hunger ended that’s a problem... (unless it’s fallen off a tree or bush and not ripe....grim!)
He has had another day enjoying being 2 and having all of his energy back but has given up now bless him. His levels have been pretty stable too. As parents we have given the go ahead to start the ball rolling for a pump....although I’m very sceptical how Jamie will ‘adjust’ to it.....How did kiddies respond the the canular to start with and as parent how was it for you guys? I think we will get our dexcom training via video link because of covid and the pump won’t happen until covid has settled so just wondering what to expect from first hand experience?
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
The cannula application will be very similar to the dexcom application (there’s an applicator) you’re not having to put a cannula into a vein or anything it just goes into the stomach or thigh like an injection. Small children tend to do well on a pump and your team will help support you through it.
stephknits
Well-Known Member
- Relationship to Diabetes
- Type 1
You will get lots of training for the pump and usually have at least a week using it without insulin so you get used to the cannula, the controls etc. The settings on the pump will be explained to you and the initial set up will be done with you, the pump rep and the DSN together. Changing the cannula can seem to take ages to begin with, but quickly becomes routine. I have a pump which you stick on and it inserts the cannula for you and the whole process takes about 3 mins. Admittedly I am doing it on my grown up self and not a toddler! Distraction would seem the way to go.
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
So sorry to hear your lad has been aboard the gluco-coaster 
Must be so difficult with little ones when doses are administered and food is then not optional.
It might be worth considering discussing split doses with your team - only taking a small part of the expected dose ‘up front’ and then topping up to cover the full amount later - or if the extra jab is problematic... perhaps just dose after eating based on what has actually gone in! It’s not ideal because insulin does take some time to get going, bit it feels like dosing before eating is sometimes causing you problems too
Hopefully the Dexcom will help you stay on top of things and take action before levels have wandered too far out of range?
Must be so difficult with little ones when doses are administered and food is then not optional.
It might be worth considering discussing split doses with your team - only taking a small part of the expected dose ‘up front’ and then topping up to cover the full amount later - or if the extra jab is problematic... perhaps just dose after eating based on what has actually gone in! It’s not ideal because insulin does take some time to get going, bit it feels like dosing before eating is sometimes causing you problems too
Hopefully the Dexcom will help you stay on top of things and take action before levels have wandered too far out of range?
Hey hey - the gluco coaster I like that, it’s exactly how it feels. I’m not sure if I could cope giving more injections....I’m not sure putting in after would work either just because he can graze a biscuit for over 30 minutes and won’t eat it if I try to force him (love a 2 year old!!)
We have had level numbers all day today always in the 6’s and woke up on a 5.5! He had a sleep yesterday and went to bed on a 17 but we are still not correcting without food unless ketones start to rise as advised by our team.
I’m glad for the chance to catch my breath today away from the gluco coaster as Jamie’s Great Nan passes away early hours this morning so we have that to work through too now 2020 has not been the best year so far.
We have had level numbers all day today always in the 6’s and woke up on a 5.5! He had a sleep yesterday and went to bed on a 17 but we are still not correcting without food unless ketones start to rise as advised by our team.
I’m glad for the chance to catch my breath today away from the gluco coaster as Jamie’s Great Nan passes away early hours this morning so we have that to work through too now 2020 has not been the best year so far.
- Status