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Mum to a newly diagnosed type1

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

WickLass

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi everyone, my 12 year old daughter was diagnosed a week ago. Last thing I was expecting to hear was diabetes, after dizzy spells and blurred vision I took her to GP with thoughts of anemia. After a quick transfer to children’s hospital and a intial BM of 39mmols we started treatment. She was kept in for a week to settle her glucose levels which took a while to lower. Thankfully her keytones seem to stay low, we have been extremely fortunate to have been discovered so early. Her consultant said another 24 hours things could have been very different.

While in the hospital she coped tremendously, started her own readings and injections on day 2/3 and coped brilliantly. We have a very supportive team, our care plan is brilliant we will see the team weekly for the first 6 weeks and then monthly after that. We were discharged on Tuesday, she then done half days at school Thursday & Friday which went well. School are very supportive, care plan is in place and staff are trained there are lots of children T1 & T2 there. Aiming to go back to school on Monday full time.

The problem we are having now is that she’s becoming very hesitant with her injections since coming home to the point she now ends up in floods of tears and unable to do them. One of her injections bounced and needle impacted twice, she is now scared of hurting herself and getting so upset with the whole situation. My daughter is also very thin & at this moment in time her consultant only wants her to inject her legs and her night-time in her bum. She says that her legs ache with all the injections. She injects 4 times a day. I think the diagnosis has finally sunk in & she now realised this is for life. I just don’t know how to get past this. I was planning on contacting our diabetic nurses on Monday for some advice.

She’s also only told a few of her friends and doesn’t want her whole year group to know yet. On Friday one of the girls found out and was then telling everyone at school because she thought the whole situation was funny and a joke. My poor girl spent the last hour before I picked her up with everyone whispering and staring. Kids being kids I know but right now my heart just bleeds for her.

Struggling parent here I just don’t know who to help her. I don’t know how to get over the injection fear, we are currently using the safety needles or I would have ordered one of those grabber things for the end. Has anyone else had to overcome these issues?
 
Sorry no one has replied to this, Sundays can be a quiet day, maybe @Northerner can pop it over into the parents section where it hopefully will get some replies. I must admit to getting a lurch in my stomach when reading about the kids at school thinking it was funny, it might be an idea to ask the teachers to have an assembly about it, not mentioning your daughter’s name of course. As for the hesitant injecting, I still get that at times and that’s when it all goes wrong and hurts. A lot of children are offered a pump, I don’t know if it’s been mentioned to you, this would eliminate the injecting part. How is she at the blood testing? I find that hurts more sometimes. 12 is “ funny” age but she will get through it with your support and the support of the school and her diabetes team. I will tag in @Bronco Billy he has two children with diabetes so will be a lot more helpful than me. Please ask any questions you want you will find us very helpful. Elaine.
 
Hi WickLass, welcome to the forum 🙂 Very sorry to hear about your daughter's diagnosis :( It's an especially difficult age to have to take on such a big thing, and it's such a shame that the girl at school seemed to consider it some sort of laughing matter, children can be cruel :( I wonder if she might feel better doing all her injections in her bum? There's no real reason why she shouldn't, since the injections are given at different times. I've only injected once in my legs, and I must admit it hurt a bit and so I moved 'up and to the rear' where there tends to be a bit more flesh and fewer nerve endings. Not always practical, of course. What size needles is she using? I was extremely skinny at diagnosis, but still able to inject in my tummy by pinching up the flesh. If possible, rubbing an ice cube on the injection site first can numb it a little. Unfortunately, it's often the fear and hesitation which makes it hurt as you tend to tense up before injecting. Has a pump been suggested?

Of course, much of the problems may be psychological, as things sink in that she's not just going to 'recover' from this, like with most other childhood afflictions. Does she know anyone else her age with Type 1? Perhaps the hospital can put her in touch with someone? If you are on Facebook there is an excellent group called 'Parents of Children with Type 1 Diabetes In the UK' who may be able to offer advice. They are a very knowledgeable, friendly group, and there may be someone in your area who can help 🙂

Have you got a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas ? If not, I would highly recommend getting a copy, as it addresses all manner of issues related to living with Type 1 in a very readable, practical way 🙂

Something to bear in mind is that Type 1 will not stop her from achieving whatever she wants to in life - there are people with Type 1 in every walk of life, many at the very top of their chosen profession or sport 🙂

Hopefully, some of our parents will be along to advise soon. Please let us know how things go 🙂

p.s. @eggyg - I was writing this when you posted! 🙂 I will move the thread to the Parents section 🙂
 
Hello WickLass. Kids ? My deepest sympathy. I know exactly what she is going through. I was T1 in 1966. Aged 3. I can tell she has the right aptitude. Good ! (Well done staff for looking after her & YOU) To say its a pain in the ----- is an under-statement. But Good Luck 😉
 
Hi everyone, my 12 year old daughter was diagnosed a week ago. Last thing I was expecting to hear was diabetes, after dizzy spells and blurred vision I took her to GP with thoughts of anemia. After a quick transfer to children’s hospital and a intial BM of 39mmols we started treatment. She was kept in for a week to settle her glucose levels which took a while to lower. Thankfully her keytones seem to stay low, we have been extremely fortunate to have been discovered so early. Her consultant said another 24 hours things could have been very different.

While in the hospital she coped tremendously, started her own readings and injections on day 2/3 and coped brilliantly. We have a very supportive team, our care plan is brilliant we will see the team weekly for the first 6 weeks and then monthly after that. We were discharged on Tuesday, she then done half days at school Thursday & Friday which went well. School are very supportive, care plan is in place and staff are trained there are lots of children T1 & T2 there. Aiming to go back to school on Monday full time.

The problem we are having now is that she’s becoming very hesitant with her injections since coming home to the point she now ends up in floods of tears and unable to do them. One of her injections bounced and needle impacted twice, she is now scared of hurting herself and getting so upset with the whole situation. My daughter is also very thin & at this moment in time her consultant only wants her to inject her legs and her night-time in her bum. She says that her legs ache with all the injections. She injects 4 times a day. I think the diagnosis has finally sunk in & she now realised this is for life. I just don’t know how to get past this. I was planning on contacting our diabetic nurses on Monday for some advice.

She’s also only told a few of her friends and doesn’t want her whole year group to know yet. On Friday one of the girls found out and was then telling everyone at school because she thought the whole situation was funny and a joke. My poor girl spent the last hour before I picked her up with everyone whispering and staring. Kids being kids I know but right now my heart just bleeds for her.

Struggling parent here I just don’t know who to help her. I don’t know how to get over the injection fear, we are currently using the safety needles or I would have ordered one of those grabber things for the end. Has anyone else had to overcome these issues?

So sorry to hear fo your daughter’s diagnosis. It is a lot for both of you to take on board at the start. You have come to the right place for help and support.

When I was diagnosed I started with 8mm needles. These hurt, and I eventually got switched to 4mm needles which were plenty long enough. What length does your daughter use at present. The most comfy place to inject for me was my bum. I don’t have easy access to all of it, but it was better than using my legs, which as they were quite skinny hurt a lot.

I go into schools to work with classes where a student is diagnosed, to help her peers understand the implications and how important access to test kit and jelly babies are. Perhaps there is someone available to do the same at your daughter’s school. You could contact the local DUK office to find out. They may also have a lot of info that they can pass on to you

The book that Northerner recommended is very good. I still do into it at times , even though I am eleven years into this.

There is plenty of help available from people on here who get it, so please keep in touch and do ask any questions that you have. No questions is considered silly on here. just ask.
 
Hi everyone thanks so much for the supportive comments. ☺️ School have been very supportive so far, they have actually offered to get an S5 girl with type 1 to meet up regularly for chats to help her to deal with everything. Hoping that this will boost her confidence for coping at school. As much as I’m doing my best to support her all my knowledge is coming from reading, actually speaking to someone else living with the condition will be much more supportive.

I did wonder about having a chat with guidance about the girls at school, hoping that when she returns this week that things will be a bit better. I’m lucky that my girl is very open to discuss things with me so should it continue I will find out quickly. My fear for having a teaching session with the year group was that it might make her more of a target. We’ll see how things progress this week, not sure who’s more anxious her or me. she does have a brilliant group of friends who have been amazing since she was diagnosed, they are keen to learn about the condition and how to help look after her should she take a hypo.

Our consultant has mentioned pumps but she wants Sophie to be able to cope with using her pen initially as she says it’s really important to be able to cope with the basics first. Glucose testing is no problem at all she doesn’t mind that so much. We are using safety needles size 0.3mm.

I saw on another thread about that book, I’ll look into it. I’ve been researching as much as I can but trying to make sure I read reputable sources. Basically mostly what we got in our pack from hospital and diabetes uk. Thanks for the Facebook group info, I’ll try to source that tonight too. I thought I would be best to start here rather than Facebook. She’s still not managed any injections independently today, I’ve been having to inject the pen & then she’s pressing the plunger. A step forward but not as good as what she was doing when admitted. Not tears over the injections today which again has made today a slightly better day. Its so difficult to watch your child struggle and feel so helpless with it all.
 
I was once at a Duk weekend event & was chosen to be in charge of girls the same age as my daughter. One had never self injected but we got her to do it. Her Mother was very pleased as where all of us 😉. good luck WL
 
I was diagnosed at 12, and well remember the pain of injecting into my extremely skinny thighs ( I weighed just 4 and a half stone when I got discharged from hospital), so I have every sympathy with your daughter!
The suggestion of using the bum is good, and if you have to twist a bit to get access tell her that twisting is good for the waistline!
It is though essential to ensure that no site becomes overused - I still have a dent in my right leg from my childhood injections, so do ensure she moves it around a bit.
Short needles and a new one each time will help certainly.
Sorry but I don’t remember much about the rest of my school days, but I think it was widely known because I had special concessions to eat in class etc, but I don’t remember having any bullying issues on that score.
Best of luck!
 
Hi @WickLass

I really just wanted to say welcome and how well I think you and you daughter are doing with this new challenge. It’s a huge learning curve at the moment and it will get easier, honest, but there will always be a few ups and downs, especially at the start.

I was diagnosed just before my 12 birthday (decades ago) and I don’t think I was immediately overly keen to share my “news”, so it’s great she has a good group of supportive friends and is happy to talk to them...as a parent you can see that the other girl is really just showing her ignorance, doesn’t help your daughter I know, but others will see this and no doubt someone else will be the focus of her attention this week anyway. Is there any reason why she should have to tell the whole year group? Others will naturally just find out over time and this way it won’t be a big issue. I found generally others were just curious and interested.

A good idea to chat to the older girl, if your daughter is happy to. Maybe your hospital team could put you in touch with other youngsters or families too if you ask, there may even be a local support group for youngsters. I’ve always found families are very happy to share their knowledge and experiences, as they’ve been in your shoes...but I do recall as a 12 to 14 year old, I wasn’t always as keen as my mum to meet up with others....so maybe be led by your daughter.

Anyway, 40 years on I don’t think diabetes has stopped me doing anything, (I’m sure plenty of people don’t eve realise I’m type 1) some things just need a little bit more thought and planning, but with all the gizmos and gadgets this is getting easier all the time.

Keep asking questions of your team and the forum.

One week in, I think you’re doing brilliantly!🙂x
 
Hi WickLass, welcome to the forum. I’m sorry to hear of your daughter’s diagnosis. My daughter was in a similar position to yours when she was diagnosed. We were told that if she had arrived at the hospital half an hour later, we’d have lost her.

She was also needle phobic. We overcame this by using a sugar free ice pop to numb the injection site before injecting, she was then given the ice pop as a treat afterwards. Her anxiety never went away completely, but this helped. It’s great that the consultant is already talking about a pump, but is right to let her cope with a pen first. My daughter has a pump and we had issues with it on Friday, which meant getting the needle out of the fridge. Cue the tears.

There is a lot of ignorance about type 1, mainly due to how diabetes generally is reported in the media. The girls who laughed only know what they will have ‘learned’ from reports about type 2, which often don’t specify the type 2 part. Rather than have a teaching session specific to your daughter’s class or year, you may be able to do something similar, but less associated with her. Diabetes UK and JDRF have resources they can send to you or the school, so you can arrange with the school to have an awareness day/week. I have done this in conjunction with my children’s school. Leaflets were placed around the school and activities arranged for form time (or whatever fancy name they’ve given it now), such as maths exercises related to diabetes. For example, if person X has a ratio of 2.5 units for 20 carbs worth of food, how much insulin would be needed for a 100g carb meal? You could even include a fund-raising event with it, such as wear something blue for £1. It sounds as if your daughter has some fantastic friends, which is wonderful to hear. It is they who matter. What anyone else says should be ignored. They will think what they want to think anyway. As long as it doesn’t cross the line into bullying, tell your daughter to ignore the ignorant, they aren’t worthy of wasting time thinking about. Talking with the S5 girl will probably help a lot. She will realise she is not alone and there is life after diagnosis.

There may be a support group in your area, have a look at https://www.facebook.com/groups/209011762801870/about/

I wish you and your daughter well with everything.
 
Hi, I came across your post today. My son was diagnosed in September. It was a massive shock to us too and we are still trying to get our heads around it all. He is 11 and was diagnosed the day before he was supposed to be starting comp so he missed the first 2 weeks of a new school.
I hope things are going well for your daughter and that you are all coping ok.
It is a massive life change that no one can understand unless you are living with it.
Good luck with it all x
 
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