Daughter been diagnosed as diabetic

[emilytankengine]

My 9 year old daughter is in hospital diagnosed with insulin dependent diabetes. She became very ill prior to diagnosis because of incompetence of our GP. She is recovering but doesn't know she has diabetes yet. Was semi conscious when she was admitted through A and E. Help!

you need to talk to spidermama - one of her ds's was diagnosed last year aged five. She is great and support and info and will be able to point you in the direction of other mners of diabetic children

All I can suggest is getting in touch with your local diabetic group who will have loads of help for you. Its early days yet and its a big shock so try not to panic. Your daughter will have to know as she will have to monitor her eating very carefully won't she? so its best not to cover up at this time.

Hi Emily I "spoke" to you on your other thread about your DD getting sick. Like I said, I was diagnosed with type 1 diabetes at your daughters age. When I found out I was diabetic I was shocked,and absolutely petrified but with the support of the docs and nurses as well as my family and friends I soon got used to it. It's really not so bad in the long term

Is she on an IV at the mo? Is she still too groggy for them to explain things?

She is better today. Blood sugars are coming down. She has had everything explained to her and she did not take it well

She is on short lasting insulin at the minute till her levels are stabalised then we have to see dietician. So much to take in. Doesn't seem fair on her. Wish it was me

Hi Emily,

I've only just seen this thread. Sorry to hear about your dd. My ds1, aged 10 has had diabetes since he was 5. you will quickly get used to living with diabetes.

There have been a couple of threads recently with newly diagnosed children. I'll have a look around and try to link them for you.

I hope she's stabilised and home soon.

When you're feeling up to it I'll give you details of a fantastic onlie support group for parents of children with diabetes that spidermama and I (and some other mumsnetters) are both involved with.

Here's one for you

www.mumsnet.com/Talk topicid=138&threadid=380093#7735408

And another

www.mumsnet.com/Talk?topicid=138&threadid=267130#5343726

Poor you! It must feel very bleak at the moment, but your ds will soon get used to her diabetes, and things will settle down to a manageable routine.

I appreciate you probably haven't thought about this yet, but don't forget to claim the benefits you're entitled to as the carer of a type 1 diabetic.

I hope she makes a quick recovery.

Some links

Kids Diabetes
has Diabetes
Diabetes Insight
Chilrden With Diabetes

Sorry if you have already had all this info.

CWD (Skribble's last link) is great. If you scroll down to suport and click on the Union Jack it will take you to the online support group I mentioned before.

I still haven't forgotten the feeling i had when i was told i had diabetes. I'd never heard of it before. She'll be ok. How's she doin now?

Emily how are things?

Hi everyone thanks for your replies. She's home now and medically she is well. Her BMs have been much more stable, mostly under 10 and we haven't had any hypo attacks yet.

She is on 2 injections of mixtard right now which is quite restricting really, having to eat and have snacks at fixed times. Is it so rigid for ever?

I went on an American site and it seems so negative like, no sweets can be eaten at all, low carb foods must be eaten. Our dietician was much more positive than this. Who is right?

Would you say you have led a normal life Paddy?

Other diabetic mums how did your kids come to terms with it. My daughter throws a hissy fit if we say she is a diabetic (she is doing ok with her injections and tests though which is a start).

Would be so grateful for any help

Hi emily,

My ds was only 5 when diagnosed so doesn't know any different or really remember life wihout diabetes. But he doesn't like to talk about it, and gets a bit cross when people think his insulin pump is an MP3 player! He used to like to show off his pump to other people but has recently become less outgoing about it.

As far as insulin regimens go, twice daily mixtard is one option, but as you are finding it can be quite restrictive as you need to keep "feeding" the insulin. A lot of people use what's known as MDI (multiple daily injections) where you have one or two injections a day of long lasting insulin and regular injections at mealtimes. You need to learn to match your insulin to the food you eat by counting the carbohydrate in the meal. It does mean more injections (my ds was on up to 7 a day before he got his pump), but it is a more flexible regimen as you adjust the insulin to the food - so if it's a low carb meal you need less insulin, and if it's a high carb meal and pudding you can give more. Ds never minded having the extra injections.

Children with diabetes can eat pretty much anything as long as they have insulin to go with it. My ds was nver much of a sweet eater, but he likes his ice creams in the summer. He's very sporty, so needs lots of high carb meals and snacks to keep him going. And if he wants a sweet treat he has it after a meal and takes some insulin.

Sorry, I've gone on at length. Come and join us on Children wih Diabetes.

I'm on basal bolus which is the regime Tangarine's DS was on before pump. You'll prob get that option when everything's settled down. I have a shot of levemir at night and multiple shots of novorapid at meal times.

To answer your question i have led a totally normal life, i play sports, drink alcohol, don't have a sweet tooth but certainly don't have a sugar free diet, had 2 healthy pregnancies too!

But you know i used to get a bit embarassed when people discussed my diabetes and to this day i still feel a bit uncomfortable bringing it up as people are so shocked!

Hello paddy! How are you?

Just wanted to say hello and if you need to chat to someone who has recently gone through a similar experience I'm more than willing to.

My dd (20months) was diagnosed 2 months ago and the support and advice I got here and over on CWD has been invaluable.

Sending you and your daughter best wishes at this time, she will be fine and so will you.

LR x

By the way, my daughter was misdiagnosed (not even tested) by my GP and I have since complained. They have apologised but said they have never had anyone as young as dd diagnosed before. They are now changing their procedures. I can't even bear to think what may have happened if I hadn't taken her to A and E the following morning.

Hi emilytankengine. I'm sorry to hear about your dd. This is a very raw time for you I know. I'm glad she's out and medically stable. You should see her physically improving greatly for a while.

My ds was diagnosed just a few days before Christmas in 2005. He was 5 and he's now 7. He's still on Mixtard. I was keen to move on to other regimes which give more flexibility but, to be honest, he's doing quite well on the mixed insulin at the moment and it's a fairly easy way forward if it works for you.

I certainly allow my ds to have sweets now and again (parties etc) but we were never big sweet eaters and he has become quite sensible. Every time he gets a party bag full of sweets or a bagful (after trick or treating the other day) he stashes them away in odd corners for hypo treatments. It chokes me up, but I'm glad.

I don't know how much to bang on at the moment as it's a steep learning curve, as you'll be discovering. I found a great deal of help and support on here from the likes of Paddyclamp and Tangerine. I also really benefitted from a Diabetes UK family support weekend, but I realise that not everyone wants to do this so soon.

Very best of luck for you all in these tough, early days. As paddy says you will get the hang of the practical side of it quite quickly. I hope your dd is coping OK.

Hi Emilytankengine ... sorry to hear your daughter has been diagnosed. It's very difficult to come to terms with, for everyone in the family. My DS (3 yrs) was dx in January this year. Like Spidermama's son, he's on Mixtard - we have good and bad days with blood sugars but all in all, we're not so bad. Other regimes are tempting but in some ways, better the devil you know. If you feel up to it, have a look in on the CWD website - it's fantastic for support & information.

I'm dreading the first hypo. Spidermama - how long was your DS off school? I was thinking of sending DD in on Monday? Did you go in and speak to teacher or nurse? Have any of you ever been given a reason for them becoming diabetic?

Hi Emilytankengine,

We've never been given a reason for diabetes. There are lots of theories about what kicks off the auto-immune response, but no answers. Something I recently found out was that you need to have inherited a gene from both parents to have the pre-disposition to diabetes which, if triggered causes it to develop. That was strangely comforting, as until then I'd completely blamed myself, as there are other auto-immune conditions in my family and I'd assumed it was all down to my rubbish genes.

That's interesting tangerine.

Emily I really remember the feeling of dreading the first hypo and worrying when ds was at school. Once I left my mobile at home for the morning and I felt so anxious.

Actually he's only ever had one bad hypo which was when we were at a festival camping. He had just cycled for around two hours and got off his bike suddenly and lay down. I initially just thought he was tired and said, 'Are you OK?' and he said, 'Are we in Preston Park?' (Our local park.) He was very confused and listless. He had a sugary drink then ten minutes later a flapjack. I remember running over to a stall straight to the front of the queue blurting out that I needed a flapjack very quickly. Everyone was so kind and understanding.

Within about 15 minutes he was absolutely fine. That's the worst he has had.

My ds has very good hypo awareness, though obviously it's better to try to avoid hypos if possible.

All I can say is that the anxiety you are feeling at the moment will soon recede and gets more managable each day as you learn to live with the condition. You will soon realise it's going to be fine.

Yes it's annoying and there's a certain loss of sponteneity, but it's managable and the possible effects can be dramatically reduced by getting into goo dhabits with control.

Certainly my anxiety levels have plummeted and on the whole we're all very settled with it two years down the line. That's not to say I don't have the odd little weep now and again, but it gets easier all the time.

I really feel for people at the begining of the journey, at the foot of the mountain. I remember it so well. Feel free to message me anytime.

Spider. x

To answer your question, my ds was diagnosed on 23rd December 2005 so near the begining of the Christmas holidays. He would have gone straight back to school at the start of term but for the fact that the diabetes team wanted to chat with his teachers to make sure they understood and had systems in place. So he only had a day or two off at the beginging of term.

Will your health team come to the school? I found this quite helpful in conveying the seriousness, even though it was an emotional meeting.

Hi Emily,

sorry to hear you are going down this track - a club noone wants to be a member of!

I know it's really hard, but please don't try to stress yourself about what caused your DD's diabetes, it is a huge mystery. So many things could be considered to be a "trigger", but be assured that it wasn't your fault, nothing you did "caused" your DD to get diabetes.

I have come in late to this thread, but to give you some background, I was diagnosed with type 1 diabetes 16 years ago, when I was 18. There was no family history whatsoever. My grandfather did have rheumatoid athritis, another autoimmune condition which may have meant I was more susceptible to getting something like diabetes, but other than that no family history. I only have one other sister, but she doesn't have it, she had the same diet as me as a child, the same childhood illnesses, the same immunisations. I guess I hit the jackpot though.

I don't really think about my diabetes anymore, it is just there. I try to look after myself the best I can, but it hasn't got in my way from studying, travelling, getting married and having two DSs.

All the best to you and your DD,