Type 1 Diabetes

[Megatron]

Hi ladies, I'm new to Mumsnet and hope I have posted this in the right place, apologies if not.

My 3 year old daughter has recently been diagnosed with Type 1 diabetes. I wondered if any other parents on here have young children with Type 1 and could offer any advice? It's been 8 weeks now and I don't really feel as though I know any more about the condition now than I did when she was diagnosed. My daughter seems to be taking it all in her stride but I'm constantly worried sick and second guess myself all the time, just terrified that I do something wrong or miss something. People keep telling me it will become second nature but I just wonder if that will ever be the case. Any advice would be much appreciated. Thanks.

Have you been put in touch with any support groups in real life?

Also would contact your local paediatric ward and see if they have a diabetes specialist nurse who can give you support and advice.

Thanks to both of you, we have a paediatric nurse who was in touch a lot in the first week or so but I haven't heard from her in almost a month, though I have left a couple of messages for her. We weren't put in touch with any support groups, just given a folder with some info and that was it really. I'll give the ward a ring and ask if there are any support groups around, thanks again for your replies.

I've got type 1, diagnosed when i was in primary school and the whole thing was much more traumatic for my mum than for me! ....
Is she on mixed insulin or the pen?

Hi

I was diagnosed when I was 3 (now nearly 30 with a ds, dh, good degree and good job). I find these people quite supportive. www.iddtinternational.org/ also try Diabetes UK/BDA or whatever they call themselves nowadays.

It takes time to get into a routine and gain confidence dealing with it. It never becomes true second nature but it does become manageable.

Hi. I have type 1 diabetes; I was diagnosed as an adult, so can't advise you much on how to deal with a child. However, reading your post I think you need advice about how to handle your feelings. Please don't be offended but that's what I think you are saying when you write;
"I'm constantly worried sick and second guess myself all the time, just terrified that I do something wrong or miss something".

Basically, that's how I felt when I was diagnosed. I would also say I was somewhat obsessed about my glucose levels, what I was eating and the insulin I was taking.

Years later,this is what would I have told myself to help myself reach a more relaxed attitude quicker:

1. Don't panic. If you check glucose levels regularly you are not going to return to your pre-diagnosis condition (in my case, I was diagnosed in Casualty after having suffered a glucose high coma... it traumatised me somewhat. I wonder if your DD was diagnosed in similar traumatic circumstances, which might explain your general feeing of dread).

1. Glucose control is not a precision art. A lot of trial and error is involved. You cannot reproduce your body's automatic insulin control, however hard you try. You can only do your best. Plus, you may need to vary the dosis of insulin in times of stress, illness or just for no reason in particular. This is not your fault nor is there anything you can do to prevent it. You (or your DD) will have unexplained highs and lows and THESE ARE NOT YOUR FAULT.

1. You will make mistakes, but you will learn from them. Your mistakes are unlikely to endanger your DD as long as you correct them in time. That's why regular checking is the way to go. High blood sudgar is only dangerous if it continues for extended periods (ie weeks) and low, only if you don't ingest sweet things when it first becomes apparent.

1. Read up about diabetes and controlling it. There are lots of informative webpages out there. Knowledge will help you understand things better and help you deal with you DD's condition on a day to day basis.

I hope this helps.... Good luck.

Thank you all so much for your replies I really appreciate it. My DD is on Humulin injection at the moment but we're probably going to try the pen soon, just trying to get her to stay still long enough may be a problem as I understand that the needle has to stay in for around 10 seconds! I'm not offended at all by you saying I need advice on how to handle my feelings, Catitainahatita because you're absolutely right. To be honest DD seems to be taking it all in her stride but I just feel so angry that it's happened at all, which is stupid because I can't do anything to change it. The unexplained highs and lows are the worst because I think I must have done something wrong. I've got a really good book ordered which I hope will help me understand it all a bit better and I'm sure over time it will get more manageable. I just wish it had happened to me and not her, she's so young. Thanks again for your replies ladies and I'll have a look at that website too. x

Hi

my daughter was diagnosed aged 4 - that was nearly six years ago now . Have you found the children with diabetes website yet ? If not google them, there is a mailing list which is wonderfully supportive and will really help you come to terms with this. Type one is incredibly hard to get to grips with and especially hard when its a child involved - as a parent you can feel all types of emotions - I know I did , and still do feel angry and some days can be desperate - thats when you really appreciate a network of mums the same as yourself.

If I can help at all, please feel free to mail me ( [email protected] )

I've found that website, it's fantastic there's so much information there. Thank you thank you thank you!! x

Great , you will find real support in the cwd community .. I wish I had known about it when we were first diagnosed ..

Its a huge learning curve that seems impossible, but you will amaze yourself with how fast you begin to get to grips with it all...as I said, please feel free to email me if you need any help xx

Hello Megatron

I don't post much on mn, but felt I had to reply to your post. We're in the relatively early stages of a type 1 diagnosis. My dd was diagnosed 9 months ago when she was just 10 months old. I can't put into words just how hard it's been, particularly emotionally (it was a very traumatic diagnosis - she was critically ill). When we were 8 weeks in we were all over the place.
But even in these few months is has got better. It's not good yet, it still takes an awful lot of time and thought and attention. But it is definitely better.
Initially I sought and was given many contscts of people dealing with simialr things. I haven't really used them as I haven't had the energy to put into making new contacts, if that makes any sense. We have had a lot of support from the NHS, particularly from the specialist diabetes nurse and dietician at the hospital.
Do you have a good children's diabetes team where you are?

I don't feel I can offer advice, but hopefully a tiny glimpse of reassurance.

Take care.

Oxymoron, I can't imagine how you must have felt when your little was was diagnosed at only 10 months, I didn't even know it was possible to detect it so young.

I've spoken to our nurse today and told her I felt a bit lost and she was brilliant. She said she hadn't been in contact because she thought I was coping well and I seemed confident about how things were going (that couldn't be further from the truth) but to be fair, I'm very good and kidding myself that I can handle things myself but actually I'm a bit rubbish at it and know that I do need some support. I know what you mean about making new contacts, because though I do because I think it will be helpful, I also wonder if I'm holding back because I'm a bit scared of what people might tell me. That sounds ridiculous even to me but I'm not quite sure how else to put it. I also have a 5 year old son and I'm so desperate that he doesn't feel affected by this but I guess the more I know, the more I can help him understand too.

I'm going to take the bull by the horns now though. I do need help with this to be able to help DD. My husband is a lovely man but his answer to everything is 'oh it'll be fine' and that's that! But it's not enough for me and I know this is not going to go away so I have to deal with it properly.

Thank you for your reply, it's been really helpful and reassuring.
Durizfan, don't be surprised if you receive a rambling e mail from me at some point.

xx

Hi again. I also have a 5yo dd. She has coped amazingly well, though has inevitably lost out on a lot of attention. I try to keep her as involved as possible. I talk to her about everything and try to answer all her questions. One thing that has really helped is trying to find ways in which she can help me with her sister's care. dd1 has become really fab at helping me with blood tests, for example (I do the finger/toe prick then dd1 does the test and tells me the number!), or she gets me a set of cannula/transfer lines when I need to change dd2's needle (she uses an insulin pump - has this been mentioned as an option for you?)

I really know what you mean by "I'm a bit scared of what people might tell me." I've really had to wait for the right time to look at certain information. I just go with my gut instinct on what I want to know & when.

It's such a steep learning curve at the beginning (and I count myself as really still being at the beginning of all this), but every experience you have, good & bad, with the diabetes management will help you to understand it better.
We'll get there in the end

My 8yr old daughter was diagnosed Type 1 six months ago. Whilst we all got used to the testing and insulin routine at home and our daughter was incredibly grown up and mature about the whole thing, the biggest challenge was her school.

The school had no experience of Type 1 and were extremely slow to come up to speed, despite continued attempts from our care team visiting school. Now two school terms on, they are eventually treating it as a lifestyle management matter. Previously they had been unnecessarily excluding her from sport by making her sit out even though she wasn't feeling hypo (just because sport teacher was nervous she might have a hypo!), over reacting by sending her to the nurse 3 times a day for no reason!. You can imagine how awful that makes a child feel - excluding a child that isn't even feely poorly. My daughter started to come home saying "the teachers don't want me in their class"

Also, the school have handled somethings differently from how we do at home, which causes huge confusion - I really resent the school for this, because they are causing her diabetes to be more of a hurdle and issue than it needs to be, because she'll get confused and then upset. All entirely avoidable.

My advice is to get the school on board as quickly as you can and try and get the routines at school the same as at home to avoid confusion. For us this meant many many visits, asking our diabetes nurse to visit them, ensure all staff who teach/have contact are briefed on the basics (hypo treatment), providing simple guidelines/care plans (as brief as possible). If you deluge the shcool with too much information, you may find they just switch off because it all seems to hard for them.

Good luck all.

Apologies for hijacking the OP?s thread, but I felt I had to comment on ExecMum?s post.

I fully agree that you need the school?s buy in to make it as easy as possible for your daughter. Equally, however, the school should be aware that children with Type 1 diabetes are considered disabled to the extent that they are covered by the 2001 Disabilities Discrimination Act and consequently it is unlawful for the school to treat them differently purely on account of their diabetes.

It is completely unacceptable for schools to exclude children with diabetes from sport if the child wishes to take part.

Children should be allowed to test their blood sugars in class ? making them go to the nurse for this is discriminatory because they miss out on teaching time. For the same reason they should be allowed to keep emergency supplies (lucozade, glucose tablets, biscuits ? whatever you use to treat your child when low) and treat themselves in the classroom if necessary.

They also need to be provided with a safe and secure area in which to do their injections, if necessary (this does not include a communal hall in a mixed school as DD?s head teacher seemed to think )

Of course, it is hard for schools, but not half as hard as it is for children and schools should not be allowed to use this as an excuse to evade their legal responsibilities.

Campaigning mum! (DCs 13 and 11, diagnosed T1 at 8 and 6)