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Newly Diagnosed Son Type 1

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

Debbie Carruthers

New Member
Hi,
My name is Debbie, hubby Allan and we have a lovely 13 yr old who has down syndrome/heart condition and now type 1.
Thomas went for routine bloods for his thyroid condition a month ago. Doc rang to say he was on wrong med strength and wanted to double it. I was a bit shocked he had doubled it so I asked for his results to be sent to Toms paediatrician. When paediatrician saw his sugar level results ( 34 ) and keytones 7 she got him into hosp immediately and this is when he was diagnosed with type 1. Tom has a few conditions with the main one being Down syndrome so having this on top has come as a huge shock to us and to him as he has no understanding why we are injecting him constantly.

We are due back to school on Monday but today ( Saturday ) I have taken a call from school to say he is not allowed to go back because I have to stay with him ( because the school could not release staff to be trained ) I am so mad they are not allowing him access to his education. I have a meeting with head on Monday to discuss the situation.

Has anyone else come across this situation with school? Me being with Tom will only be for 2 weeks, until the teachers have been trained. Tom is first child in school with type 1.

My little dude already suffers with bullying and discrimination due to Down syndrome so I am not going to let type 1 be another reason to be excluded. One very upset/angry Mum here. We have only had 1 week to get our heads around having type 1 so you can imagine what our life is like at the minute.

Anyway I look forward to making new friends in the same position as we are now in and I am sure I will be asking many questions on the forum in the coming weeks

Debbie x
 
Welcome to the forum, Debbie. We are a friendly bunch and there are parents on here as well as us older Type 1 folk. I am sorry to hear about the school response. I know Diabetes UK have done lots of work around Type 1 children and schools - will try to find a link. They also have a helpline which can advise in situations like this, they may well be worth a ring. https://www.diabetes.org.uk/how_we_help/helpline

This is the schools page https://www.diabetes.org.uk/Guide-to-diabetes/Your-child-and-diabetes/Schools
 
Welcome, that's a lot of hurdles and the bullying and School attitude boils my blood. I'm sure there are parents/Carers on here with type1 kids so question away. Good luck.
 
Welcome ! You have joined a good forum with lots of caring members. I have been T1 from the age of 3 & I would like to to see those Bullies. Really good luck & please keep at it. 😉
 
Debbie Carruthers said:
Hi,
My name is Debbie, hubby Allan and we have a lovely 13 yr old who has down syndrome/heart condition and now type 1.
Thomas went for routine bloods for his thyroid condition a month ago. Doc rang to say he was on wrong med strength and wanted to double it. I was a bit shocked he had doubled it so I asked for his results to be sent to Toms paediatrician. When paediatrician saw his sugar level results ( 34 ) and keytones 7 she got him into hosp immediately and this is when he was diagnosed with type 1. Tom has a few conditions with the main one being Down syndrome so having this on top has come as a huge shock to us and to him as he has no understanding why we are injecting him constantly.

We are due back to school on Monday but today ( Saturday ) I have taken a call from school to say he is not allowed to go back because I have to stay with him ( because the school could not release staff to be trained ) I am so mad they are not allowing him access to his education. I have a meeting with head on Monday to discuss the situation.

Has anyone else come across this situation with school? Me being with Tom will only be for 2 weeks, until the teachers have been trained. Tom is first child in school with type 1.

My little dude already suffers with bullying and discrimination due to Down syndrome so I am not going to let type 1 be another reason to be excluded. One very upset/angry Mum here. We have only had 1 week to get our heads around having type 1 so you can imagine what our life is like at the minute.

Anyway I look forward to making new friends in the same position as we are now in and I am sure I will be asking many questions on the forum in the coming weeks

Debbie x
Click to expand...
Hi Debbie, welcome to the forum 🙂 Very sorry to hear about your son's diagnosis, particularly when it comes on top of the other things he is having to deal with :( I can't advise on schools as I was diagnosed aged 49, but I would highly recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas. It is a really useful reference to all aspects of living with Type 1 and will hopefully answer many questions for you, or prompt new ones for your team to answer for you. What insulin is he using? There is a very steep learning curve to begin with, but things do get easier with time and experience. If you use Facebook there is a very good group of UK-based parents of children with Type 1 who will be happy to help you and direct you to helpful resources. Their website is http://www.childrenwithdiabetesuk.org/ which includes a link to FB groups and other helpful information.
 
Hi there

What a horrible situation to be in! I do feel for you. When my daughter was diagnosed she was 6 years old, we were a little bit luckier than you in that we had the whole of the summer holidays to try and get used to it before she went back to school, but we were very much still learning when she did. I went into school on the inset day at the beginning of September and spoke to her new teacher, it only took about an hour to go through the very basics of how to help her to do her insulin at lunch time, how to spot signs of a hypo, what to do if she's having a hypo, phone me if anything else happens that you don't understand or an ambulance if she becomes unresponsive (that last one has never yet happened but you have to be prepared!). That got them through the first couple of days until the nurse was able to go in and fill in any gaps I'd left and to help me to get the beginnings of a care plan in place. And that was it, our hospital do offer official training for school staff at intervals, but no-one from that school has ever been on it to my knowledge, it was just up to me to make sure each new teacher understood enough about it. There are two other children in that school with T1 and as far as I'm aware the teachers involved with them have just got on with it too. I wanted to get the diabetes nurse in to do some on-site staff training, and she was willing, but I couldn't get the senior staff at school to get their fingers out and organise it, which was a bit annoying.

The secondary school which my daughter is now at have it much better sorted as they have had diabetic students before, they basically told me what the lunch time procedure would be (she is excused from the last morning lesson 10 minutes early, goes to the medical room to do her insulin and then proceeds directly to the canteen and has a queue jump pass if required), all staff who teach her have seen a copy of her care plan and have been advised to ring the medical room straight away if she appears to be ill. Although so far I think the only hypos she's had in class have been very minor ones which she's dealt with herself and the staff were none the wiser.

Would any of this be useful when you have your meeting with the head? Diabetes is very scary when you know nothing about it, even more so when you are dealing with someone else's child (with your own you just get on with it because you have to, and in time you will understand their condition extremely well, with someone else's child in a way you're even more terrified of making a mistake and bringing them to harm, especially if you don't understand so much about the condition). However it is not a problem that can't be dealt with. I realise that your son has other health problems, and I admit I have no clue how much harder that may make things, but if school are able to manage those then I don't see any reason why they can't manage his diabetes too.

I don't know if any of that is helpful, but I wish you luck and hope that your meeting goes well 🙂

Just realised I'm a bit late on this thread and you've probably had the meeting already, sorry :( Hope it was useful!
 
Welcome to the forum, it must be hard having a child diagnosed with diabetes. I hope everything has worked out after your meeting at the school. I also hope the school are addressing the bullying.
 
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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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