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22month old newly diagnoised

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

Odinns mummy

New Member
Relationship to Diabetes
Parent of person with diabetes
Hey my baby boy Odinn has just been diagnoised with type 1 diabetes I feel like my head's in a washer! Minefield of information n feel like I've brought a new born baby home looking forward to get tips an information of here as I feel so isolated right
 
Hey my baby boy Odinn has just been diagnoised with type 1 diabetes I feel like my head's in a washer! Minefield of information n feel like I've brought a new born baby home looking forward to get tips an information of here as I feel so isolated right
Hi @Odinns mummy , welcome to the forum 🙂 So sorry to hear about your little one's diagnosis :( Perfectly understandable that your mind is in turmoil at the moment, with so much to take in.Things will get easier, but for now try to take in what you can and anything that confuses or worries you, please ask and we will do our best to help 🙂

How old is he, and how did his diagnosis come about? What insulin has he been given, and how is he dealing with the finger pricks and injections? Can I suggest starting by reading Adrienne's essential guide for parents of newly-diagnosed children, which hopefully you will find helpful 🙂 Try not to become overwhelmed with everything, although there is a steep learning curve there is a lot of support, both from the people here and hopefully also from his healthcare team. Although it is a serious condition, it can be managed well with the right knowledge and plenty of forward planning and it doesn't need to hold him back from doing anything he wants to do in life - children with Type 1 can grow up to be at the very top of their chosen sports or careers, with people like Henry Slade the top England international rugby player to Theresa May the Prime Minister.

I would highly recommend getting hold of a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas. It covers all aspects of living with Type 1, and will answer many of your questions - it's not cheap, but it is the most reliable, well-written and positive source of information you will find 🙂

As I said, please let us know if you have any questions about anything - nothing is considered 'silly' - and we will be more than happy to help 🙂 We have many members here who were diagnosed as children, and also who are currently parents of children with Type 1, so there is a wealth of knowledge and experience for you to draw on. You are not alone 🙂
 
Thank you for your reply he is 22months old he has been put on novarapid 3x a day and levemer at night I was up with him until 4am this morning his night time bloods spiked to 21.8 I'm so scared for him, we got diagnosed on Monday I took him the doctors because he was have really full overflowing nappies at night uncontrollable thirst but on Monday he was vomiting etc so rushed him to the doctors they did bloods they was at 28.1 he was in ketoacidosis he was limb eyes rolling I was awful I'm fumbling around because I think everything I do is wrong I have to go back to work Monday an all the care will be upto my husband I'm dreading it! My brother was diagnoised as T1 at 12year old he's now 50yrs old but my boy is a tiny baby he's a trooper tho if you say come on mate let do your bloods he grabs his machine an let us do it same with insulin he gets his pen an say mine mine I've 2other children 3,2years I'm feel like I'm drowning right in tiredness,information,anxiety I've found myself so anxious now about what I give him to eat etc sorry for the rant but I have no one to talk to about this
 
Thank you for your reply he is 22months old he has been put on novarapid 3x a day and levemer at night I was up with him until 4am this morning his night time bloods spiked to 21.8 I'm so scared for him, we got diagnosed on Monday I took him the doctors because he was have really full overflowing nappies at night uncontrollable thirst but on Monday he was vomiting etc so rushed him to the doctors they did bloods they was at 28.1 he was in ketoacidosis he was limb eyes rolling I was awful I'm fumbling around because I think everything I do is wrong I have to go back to work Monday an all the care will be upto my husband I'm dreading it! My brother was diagnoised as T1 at 12year old he's now 50yrs old but my boy is a tiny baby he's a trooper tho if you say come on mate let do your bloods he grabs his machine an let us do it same with insulin he gets his pen an say mine mine I've 2other children 3,2years I'm feel like I'm drowning right in tiredness,information,anxiety I've found myself so anxious now about what I give him to eat etc sorry for the rant but I have no one to talk to about this
Sorry, of course you had told me how old he was in the title! 🙄 Don't worry too much at the moment if his levels are a bit on the high side, it will take a period of adjustment whilst you and his team find the appropriate doses on insulin to bring them down to better levels. It's actually better that they don't fall too quickly. He's on a good insulin regime, and one that you will learn to adjust as time goes on, but your don'ty need to concern yourself about that right now. Has your husband been helping you so far? The main thing to watch out for is if his levels fall low ( a 'hypo'), in which case you will need to give hime something sugary to raise them - has this been explained to you? Does he have something that he will happily drink, like apple juice, or sweets that are easy to eat, like jelly babies? Do allow yourself a break and let your husband take the strain whilst you get some rest 🙂 Children are remarkably resilient, as I'm sure you have found with your others - it's good that he doesn't mind the blood tests and injections, brave lad! 🙂 Just follow the advice you have been given from his team about food, or feed him normally for now. People with Type 1 can eat pretty much the same as everyone else as long as they have the insulin doses correct, and this is what the team will currently be looking to establish. He's a growing child and will use a lot of energy 🙂 What sort of things does he like to eat? Anything you are not sure of, just let us know and we can reassure you 🙂

If you are on Facebook there is a very good group of UK parents (some of whom are, or have been, members here) - they can be found at Parents of Children With Type 1 Diabetes In The UK. Hopefully your brother will also be able to help out and reassure you 🙂

Keep letting us know if there is anything, but do please take a little while to have some 'you' time - if you can't sleep, perhaps just go for a little walk. It's horrible, but perfectly normal to feel like you do after such a shock, but it WILL get better, I promise 🙂
 
Rant away Odinns mummy - get it out so that you can dump it and use your energy to get things organised. You have seen T1 diabetes before in your brother so you have a head start on a lot of others who have found themselves in your position. Does your surgery have a specialist diabetes nurse? If so then get her on your case until you have a regime that works for Odinn. If not then get an urgent referral to somebody who can give you expert help. You might have to make a bit of a nuisance of yourself but do it. Anybody amongst your circle of freinds who can be of practical help? If there is then don't be afraid to ask. I know it is easy to say and hard to do, but getting stuck in to the things you can do is one way of dealing with the deluge of information that you will be floundering in.

Take up northerers suggestion. Take time to come on here and rant or ask questions. You will get answers some of which you can work on. More importantly you will find out very quickly that you are not alone.
 
@Odinns mummy - you will be under the care of the paediatric diabetes team at the hospital and should have met them and been given the direct contact numbers for them - NEVER be reticent in ringing 'your' nurse - she is there for you and his daddy, as much as for Odinn himself.

Mummy - there's an organisation called JDRF and they do a 'goodie' bag for newly diagnosed kiddies you can send for - the 'Kidsac' - see
https://forum.diabetes.org.uk/boards/?_ga=2.66831278.1605243748.1498653002-29477960.1498653002
and give shedloads of info on their website to help the whole family.

(Unlike Type 2 @doc B - in the main neither GPs as a whole nor their nurses, are even expected to be particularly proficient and helpful with Type 1 - and absolutely not in the case of children. It really is a specialist area - different Consultants and different Specialist Nurses, clinics at different times on different days, quite frequently in a different part of the hospital, to the adult ones.)
 
Thanks for putting me right Jenny. And odinns mummy, ignore me and listen to Jenny!
 
Thank you lovelys yes he has a specialist nurse she comes out most days or if she does I just ring for her to give me his insulin needs for the day his dad help out but I find myself constantly on edge an checking up on him, Odinn enjoys jelly babies on a 'low' he enjoys any food mostly veggies and cheese but he will literally eat anything thank you for all your responses I feel like I know someone is there now
 
We're all here for each other.

You know I was thinking again about my response. You've told us what a little trooper he is accepting it as 'His' and so there's something I do need to say to you - he clearly has a 'coping' mechanism doesn't he? Well he didn't invent that - YOU two made him like that and hence - that must mean that however overwhelmed you may feel right now - and we all do when we're first diagnosed so you are entirely normal - this must mean that you pair have good coping mechanisms too !! Else - where the hell could he have got it from? :D
 
Thanks for putting me right Jenny. And odinns mummy, ignore me and listen to Jenny!

Doc - you were welcoming, sympathetic and tried to help! That's all we can do to start - the tips come later and just follow on. Yes - I did see that you weren't familiar with what should happen when a kiddy is diagnosed - but why/how would/could you be? I only know the bit that I know from a) watching the paediatric diabetes service develop over the years and b) hearing about it (or lack of it in some parts) from being a member of DUK and on forums for yonks.
 
@trophywench thank you yes I do have a good copy mechanism sometimes I do wonder how I do it with the stuff that's been thrown at me over the years his dad not so much I kinda take the strain wierd thing about all this is I start a new job tomorrow in Manchester hospital as a trainee diabetic nursing assistant!!! God knows how I'll get threw with the lack of sleep I'm on but I've just got to knuckle down and do it last night he woke when I had to blood test him at 2.30 took me til 5am settle him again!! Eeek kids at lol
 
@trophywench thank you yes I do have a good copy mechanism sometimes I do wonder how I do it with the stuff that's been thrown at me over the years his dad not so much I kinda take the strain wierd thing about all this is I start a new job tomorrow in Manchester hospital as a trainee diabetic nursing assistant!!! God knows how I'll get threw with the lack of sleep I'm on but I've just got to knuckle down and do it last night he woke when I had to blood test him at 2.30 took me til 5am settle him again!! Eeek kids at lol
I hope the job goes well, good luck! 🙂
 
It is a bit of a trick I learned years ago as an R&D scientist - when you have an idea just come out with it as a prompt for a discussion. If it is a good idea somebody will pick it up and move it on but if it is a non-starter then some body better informed will put you right. Works if you are happy to be wrong if the right answer is elicited - as happened here - and I'm of a age when being right all the time really does not matter anymore!
 
Funny how that last bit faded after I retired - or was it the Counsellor who asked me a pointed question once - 'Who was the control freak in your house when you were growing up, Jenny?' (my mother …..) Just a pity nobody gave me that hint a good many years before that.
 
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