• 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.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Son newly diagnosed Type 1

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

CRiddi18

New Member
Relationship to Diabetes
Parent of person with diabetes
Son has recently been diagnosed with Type 1 diabetes - so much to learn and how to manage condition. Feeling overwhelmed.
 
Welcome to the forum @CRiddi18 . I am sorry to hear about your son, what a shock for you.
How did he come to be diagnosed.
Others will be along later with cyber support and advise, Feel free to ask any questions, we’ll do our best to help.

Right now your on a very steep learning curve and I can’t begin to imagine how you must be feeling.
I would like to try and reassure you that this is doable, With the right info and support from your sons team, Diabetes can be managed well.

This book come highly recommended by people here, it should be helpful for you too.
https://www.amazon.co.uk/Type-Diabe...irect=true&ref_=as_li_tl&tag=poemforactidi-21

You may find this old thread helpful
https://forum.diabetes.org.uk/board...rents-of-newly-diagnosed-children-pt-1.23853/
 
CRiddi18 said:
Son has recently been diagnosed with Type 1 diabetes - so much to learn and how to manage condition. Feeling overwhelmed.
Click to expand...
Hi CRiddi18, welcome to the forum 🙂 How old is he and how did his diagnosis come about? There is an awful lot to take in, particularly to begin with, but it does get easier with time as your experience grows. I'd really recommend getting a copy of the excellent Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas. It's an essential guide to all aspects of living with Type 1 (whatever your age!). Also, if you are not already aware of it, you might want to get a KIDSAC from charity JDRF, which is a support and information pack for children with a new diagnosis of type 1 diabetes.

For yourself, you might want to read Adrienne's essential guide for parents of newly-diagnosed children, written by one of our members, which will hopefully help you to come to terms with the diagnosis 🙂

Although it is distressing to get such a diagnosis, you should also know that people with Type 1 do not have to let it stop them from doing the things they want to do in their life. There are many examples of people in all fields who have reached the very top of their profession, including elite sportsmen and women, and the technology, knowledge and research is improving all the time 🙂

Please let us know if you have any questions - there are some very friendly, knowledgeable people here who will be able to help with almost any question you may have, and no question is considered 'silly' - so ask away! 🙂
 
Welcome to the forum @CRiddi18. Sorry you've had to find us.
How old is your son? Advice for a parent of an 18 month old and 18 year old would be very different.
 
Welcome from someone who has been T1 since the age of 3 in the year England won the world cup. There is a lot to take in but you have joined a good site with lots of helpful diabetics. 🙂
 
Hello and welcome to the forum Criddi. 🙂 I'm sorry for your son's dx but you've come to the right place for help and friendship.
 
Hi and welcome. Sorry to hear about your sons diagnosis :(
This is a great forum for advice, support and general chat 🙂
 
So sorry to hear about your son's diagnosis. There are literally centuries of diabetes experience on the forum here, so feel free to rant, moan and ask any questions you might have.

If you need a source of useful information you might also like to check our https://www.t1resources.uk where websites/videos/online groups etc have been reviewed by people with diabetes and checked for safety/reliability by healthcare professionals.
 
Thank you everyone for your really helpful links and resources. Dealing with the diabetes is possible but my anxiety and feeling of helplessness is that before his diagnosis (he is 7 1/2 years old) I have worked with his school to get him assessed re being on the autistic spectrum. We are now on the 16 week waiting list to get an assessment date. This means in practice that my son lashes out at home at me and my partner, questions all rules set, needs constant attention/stimulation (gets bored and frustrated easily) and is subject to nightmares and vivid horrible imaginations. He is also fixated on dinosaurs to the exclusion of a lot of other things. When he is a good frame of mind he is great and affectionate and can entertain himself drawing, reading or making things but this can flick in an instant. I used to cope by getting out of the house regularly for walks, excursions but all the kit for Diabetes now makes this daunting for me. His school is being very good but this is the first case for them to manage of a child with type 1 Diabetes so they are on a steep learning curve as well, besides dealing with his behaviour issues.

Just about cope with injections/blood testing by getting him involved as much as possible but really difficult when it can involve me being punched in face or kicked and not lose my rag . . .
 
Well I don't envy you it's true. But none of us here - as far as I know - can help regarding the autism issue, only the diabetes one. I presume there must be a similar forum for parents of autistic kiddies, but if not why don't you start one?
 
CRiddi18 said:
Thank you everyone for your really helpful links and resources. Dealing with the diabetes is possible but my anxiety and feeling of helplessness is that before his diagnosis (he is 7 1/2 years old) I have worked with his school to get him assessed re being on the autistic spectrum. We are now on the 16 week waiting list to get an assessment date. This means in practice that my son lashes out at home at me and my partner, questions all rules set, needs constant attention/stimulation (gets bored and frustrated easily) and is subject to nightmares and vivid horrible imaginations. He is also fixated on dinosaurs to the exclusion of a lot of other things. When he is a good frame of mind he is great and affectionate and can entertain himself drawing, reading or making things but this can flick in an instant. I used to cope by getting out of the house regularly for walks, excursions but all the kit for Diabetes now makes this daunting for me. His school is being very good but this is the first case for them to manage of a child with type 1 Diabetes so they are on a steep learning curve as well, besides dealing with his behaviour issues.

Just about cope with injections/blood testing by getting him involved as much as possible but really difficult when it can involve me being punched in face or kicked and not lose my rag . . .
Click to expand...
Really really good luck & please ask & we will do our best 🙂
 
Simple questions now - what do parents and children use to carry diabetes kit around with them (pens, testing kit, glucose tablets, glucogel plus snacks so don't feel like going out on a major expedition just to visit shops and for parents is there a handy emergency contact details tag or similar you use for attaching to child to let know if found they are diabetic and need insulin supply. How do you also cope with school supplies of kit and snacks when at Primary School?
 
CRiddi18 said:
Simple questions now - what do parents and children use to carry diabetes kit around with them (pens, testing kit, glucose tablets, glucogel plus snacks so don't feel like going out on a major expedition just to visit shops and for parents is there a handy emergency contact details tag or similar you use for attaching to child to let know if found they are diabetic and need insulin supply. How do you also cope with school supplies of kit and snacks when at Primary School?
Click to expand...
I can answer the question about what to carry things around in - many of us use a pencil case! 🙂 Cheap and lots of possibilities to choose from 🙂 There are specialist kit bags but they tend to be very expensive.
 
Have you looked at the JDRF site, after all they only exist because of children with diabetes!
 
Just noticed that I hadn't pointed out to you the Children With Diabetes UK website - there's lots of information on there, plus they have a very active Facebook group full of knowledgeable parents 🙂
 
There is also a thread on this forum specifically for parents. You might want to access that as well as other parents will have dealt with what to have where at school.

I only know from the point of view of a teacher. I had jelly babies in each room that I taught in, as well as in my office and school bag. It sounds as if the school is on board, and if this has not already been done it is good to get a meeting with your son's specialist nurse, formteacher, ... the school should also have an agreed care plan and what to do in the case of hypos or hypers.

With regard to going on it for walks or anywhere really, there is a basic kit that I just always have in my bag. My bags have got a bit bigger since diagnosis to cater for this, but I have a mental checklist before leaving the house.
Insulin, test kit, emergencies (jelly babies, glucotabs, snacks), keys.
You will have your own list of specifics for your son and it will simply become a habit.
 
The National Autistic Society have a good website, with reference to your son's autism, also check out The PDA Society website as they have some good strategies for trying to manage the challenging behaviour, lots of children on the autistic spectrum have demand avoidance to some extent. I have used some of the strategies on my autistic children and some have helped.
Look into applying for DLA, Cerebra have a website to help with getting the right information on the application form, you don't need a diagnosis to apply, with your sons diabetes you should also meet some of the criteria.
Have you thought about getting him the Libre, if he will tolerate it, it should help to check his bgs with less finger prick testing.
Feel free to pm me if you want, I understand how difficult it is to have a child with autism and I also work with children who have challenging behaviour.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top