New Diagnosis - life changing!

Hi

Firstly I,m sending you hugs youre not alone theres quite a few youngsters on here with Diabetes, try not to worry .. easier said than done I know! but you will notice a difference in your daughters health straight away (no thirst etc). I,m still a newbie and learning, so I know exactly how you feel, Ewan was diagnosed end of Aug but this board has been brilliant and helped me so much, lots of advice and someone will always be able to answer a question.

Your DN will visit the school and explain everything to them, we didnt think Ewans school would know anything about diabetes either but found out a boy the year before had been and also a teacher, you never know.

Take Care
xx

Hi, So sorry to hear about the diagnosis of your daughter. I have 3 children, 2 of which are type 1. My husband is also diabetic so we knew there was an increased risk that our children may get it. Nothing, however prepares you for the diagnosis and it did take me some time to come to terms with it. Having said that, things do get easier and once you get to grips with it, it becomes a way of life.

Living with diabetes today is a lot different than it used to be. Medication and care is far better and there is no reason why your daughter should not live a long and healthy life. You must give yourself time to get over this. You will recieve a lot of support and forums like this are a fantastic as there are others who are and have experienced what you are going through. I hope you find this forum as helpful as I have. I have used it for advice, support and a shoulder to cry on. Leggott

Hi Niamh's Mum.
Welcome to the forum. Sorry to hear about Niamh's diagnosis. It must have come as a great shock to all the Family. Once you get to know all the in's and out's of Diabetes I am sure things will get better.

As you can already see you will get great support and loads of advice from the members of this Forum. There are Mum's and Dad's, children of Niam's age too, hopefully some will greet you both later.

Whatever you need to know just ask, there is always somebody around with an answer.

hi and a warm welcome to you and yours, as already said..ask anything u like and there are many parents who will be of help to you

Hi,
I'm a mum to an 11yr old son who was diagnosed almost 4yrs ago, and i'm sending lots of (((hugs))) I like lots of mothers here on the forum have been where you are now. Believe me it does get easier and your always learning something new. Please ask any questions you need, express your anger if need be with a good old rant, its a natural emotion and come back for plenty of support and understanding.
Take care,
Suzi x

Hi, I remember that feeling when they tell you that your child is diabetic and it is horrible. We have a two year old who was diagnosed 2 weeks after her first birthday and was really ill needing high dependancy care in a hospital 6 hours away.
I thought our lives as we knew them would be a nightmare and was overwhelmed. Today I can sit here and honestly say that it's okay. It was a steep learning curve as we are not diabetic and nor is our son. I'd be lying if I said there weren't times I shed tears at what I perceived as our loss of a "normal" child but now it's just who she is.
Please talk to other people about how you are coping as it is important that you don't try to be super mammy and beat yourself up over the what ifs and believe me life will be normal again. Take care.

Good luck with everything and school!!!

I wouldn't think it a problem for you to keep doing injections but it will eventually become necessary to be self-sufficient. It's pretty early days for your family and a lot to learn. Does the nurse think it is better to be tough now on self injecting so it doesn't get put off forever? One day your daughter is going to want to do things that will require she do her own injections and testing but only a parent would know if it is right to push that sort of issue at the start or gradually over time. Different personalities handle things in different ways.

All the best.

Goodluck with today, i'm sure you felt as if it was Niamhs very first day at school, and it will probably feel like one of the longest until she comes home this afternoon, thats how it felt for me.
Regarding your nurse insisting Niamh doing her own injections at this early stage, i feel, is really not her discission to make. A child has a lot to deal with, and doing your own injections is pretty daunting and scary thing for anyone, more so for a child. Andrew was diagnosed at 7 in the Feb and took him to the following July when he was 8, whilst at diabetic camp to find the courage to do his own. Even a resent stay in hospital found him insisting on doing his own injections, he won't let me near him with a barge pole, let alone a needle!!
So i wouldn't put any pressure on her, you'll both know when the time is right, and setting a time for her to become independant, like a school holiday, ie Easter/Summer would give you both a more relaxed time to do so.
Let us know her insulin regime and we'll help with suggestions for diet and snacks, it can all be pretty daunting, but your already doing a marvellous job,
Take care,
Suzi x

Hi Gayle,

Glad the day was good even if it was a little worrysome.

I've been on a few Diabetes Camps and the nurses who have been running them here for the last 20 years always make the point that children are children first and diabetic second. Sure you'll have to make some food choices now and again but having diabetes is no reason to go hungry or miss out on every treat. As you get to know what foods do what you'll be able to accommodate them with insulin. I wouldn't ever give Khaleb injections close together (at least 2 hours apart) though as it can cause a rather sudden drop if the doses stack on top of each other. Portion size might have to be considered also. Your daughter may have lost a fair bit of weight before her diagnosis and felt fairly poorly so she might want to eat a bit more than normal.

A word of warning about many sugar free items, they can cause explosive diarrhoea. Khaleb has a supper every night before bed to get through the night.

Hope all keeps going great, Jen.

Hey Gayle,

Totally empathise and understand what you are going through at the moment.

I have a 13 year old daughter who was diagnosed T1 when she was 9, it is hard at first with lots of tears and guilt and anger of why me, why us, not fair and want to just be normal.

There is so much info and it's very overwhelming but it does as everyone says get easier and you do get to the point where they are still the person they are first and diabetic second.

When Paige was first diagnosed she was on two injections of Mixtard 30 insulin a day and blood tests 4 times a day, 3 meals at same time each day give or take an hour and snacks mid morning, mid afternoon and supper. We had to start off using syringes, as she was so upset at the hospital on diagnosis myself, husband and son who was 11 at the time all did a finger prick to show her it didn't hurt. my husband and self also injected each other with an empty syringe, this helped her fears big time. We got her to inject oranges with empty syringes initially and this helped build her confidence to do her own. Theres an organisation 'JDRF' if you search in google will bring it up, you can get a KIDSAC from them for free which includes Rufus a bear with sites to inject and blood test along with other things, my daughter liked that and may help. What insulin is Niamh on?

The school sounds like they are very clued up and all should be fine, sounds like you will have great support and understanding there.

It is very worrying and tiring, takes time to understand and get your head around it all.

Take Care, any questions, ask away.

Heidi x

Hi

I know if Ewans high he has headaches even when the numbers start dropping, could be tiredness as well as what a week youve all had! Sounds like she,s doing well xx

Hi Gayle

Thats brillient indeed, well done Niamh

I remember my reaction to my first injection, It was a case of you've got to be joking I'm not a nurse! I was in my mid 20's at the time

Even though strickly speaking 4.9mmol/ml isn't a hypo, your daughter had what is termed a phamtom hypo, this is where the blood glucose has been running higher than normal, and with the drop the body says hypo, sometimes you get the same effect if you have a sudden drop of blood glucose levels as well.. You did right by treating as an hypo this is what your DN would have told you to do.

Sometimes I can get the shakey feeling and my levels are alright, so I will have a carb free snack, bit of meet or chunck of cheese to sort it..

It is very good that she not only had these symptons as it shows she has some hypo awareness, which in young children isn't always there until they are a bit older... And it's even better that she actually said how she was feeling if she keeps this up then she be able to avoid a lot of strife concerning hypos..

Good phrase for her to learn, if in doubt take a BG..

Hi Gayle,
Absolutely delighted that Niamh is doing her own injections, i remember when Andrew started to do them at camp himself and he wrote me a postcard to tell me how things were going. Right at the end of the message he squeezed in, 'and i'm doing my own injections', i cried!! It was one of my proudest moments, and something all parents must truely feel.
Her body letting her know at 4.9 that she was going hypo is a good thing, over time, when her bs level are panned out a bit more, she'll probably have the feeling when she's slightly lower. But you did the right thing in treating her. Andrew once had a drastic drop of bs (2.4) and didn't feel a thing, but i knew to look at him that he was hypo, pale, glazed eyes, vacant expression and very agruementative. You will recognise this too in Niamh. As long as you treat a hypo with a lucozade, jelly babies ect, then follow with a long acting carb, she'll be fine (andrews lowest has been 1.2) still standing and took half bottle of lucozade, and 4 slices of toast and a long sleep afterwards for recovery and he was fine.
Take care and i'm shuffed for you both,
Suzi x

Well done Niamh thats great news sounds like you are all doing very well

x

Hi, i'm new to this forum business but after reading a few posts, particulary yours, i felt the need to join. My daughter was diagnosed with type 1 diabetes 4 years ago following a brain virus. She was rushed to A&E where we didn't think she was going to make it and was then left with no mobility, speach or senses for a while, she had seizers and as a result was left with diabetes. She spent a long time in hospital wired up to drips and had many cannulas as her veins kept collapsing. She was a very poorly frightened 8 year old at the time. She developed a needle phobia due to the terrible time in hospital and I was told by a nurse if she refused her injection when we were home then I should sit on her and inject in her bottom. Not good times. We have had an amazing team of specialist diabetic nurses looking after us, one in particular, who introduced us to some amazing tools.

My daughter was using Novamix insulin so we could use a 'PEN MATE' which is a device that is fitted to your normal insulin pen but rather than having to put the needle into the skin yourself, the device does it for you and also shields the needle so it cannot be seen. This was a huge turning point for us and gave our daughter confidence and independence.

As she was so poorly she was running high ketones. We were given a BM monitor that you can also test your ketones on. The machine is an Optium Xceed which allows you to test blood glucose and ketones. You can detect ketones in the blood alot sooner than you can in the urine therefore allowing you to pick up on a problem sooner and deal with it before your child becomes really poorly with ketones.

My daughter had problems with insulin not suiting her and after a long and hard slog with the hospital they now have funding for pumps for children, my daughter being one of the first lucky ones to receive one. Our life has changed completely since being on the pump.

At the time of diagnosis I had a 18 month old who struggled with all the upset and anxiety that me and my husband went through. It took me a long time to come to terms with Diabetes, its a life changing experience that affects the whole family. With time it becomes second nature and you settle into it but it seems like a mindfield at first. Children are so brave, I think my daughter has accepted it better than I have, after all they have to, this is the way of life now for them and they just seem to get on with it. I have alot of admiration for all those children out there getting on with life.

We got involved with JDRF which is a children's charity dedicated to finding a cure. They do lots of different charity events to help raise money for research. I do believe that in our children's life there will be a cure. Hold in there. I will pray for you all and hope you get the same support we had and are still getting. As I said earlier we have an insulin pump now and our first month has gone really well, its an amazing piece of kit. Regards to all.