Newly diagnosed 10 year old boy

[head_stock]

My 10 year old son had been wetting the bed, drinking huge amounts and feeling tired over the last couple of weeks, and yesterday was diagnosed with type 1 diabetes, this was a big shock to everyone as we have no history of diabetes in either mine or my wife's families and despite spending far too much time in front of computers/consoles we have always been a reasonably fit and healthy bunch. Our initial reaction (not surprisingly) was one of concern and fear of the unknown, OK enough background...

I am currently doing my own research on the internet and we should get a whole load more info from the diabetes nurse today, but heres my question for those of you who have been through this with your own child/children - With your experience of having a child with diabetes what (in your opinions) are the one or two BIG things that have really worked well for your child and your family in helping to get to a point where your child is managing well, is happy and doing the right stuff (eating/exercise) and the situation is stable and sustainable. If you feel there are any BIG pitfalls to warn us about feel free to mention these as well - but the main thrust is what can we do that you have found to have the biggest positive effect on your own childs situation.

I know I'll pick up the detail on most of this stuff as I do my research, but right now I'm just looking for when you introduced somthing or made a change and thought 'WOW - that (thing we did) made a huge difference, and my son/daughter is so much happier and coping much better'

Thanks very much in anticipation.

Tom

 

[emmamadi]

Hi. My 2 year old just got diagnosed about 6 weeks ago so we are still in very early days as well. Im afraid I dont have any advice, but I thought your post was an interesting one and I will be watching for any replies and info that might also help us. Sorry no useful advice but heres hoping we learn some new stuff......!
Emma

 

[annettekp]

Hi

My 3 year old was diagnosed at 20 months old. The main thing that has helped has been carb counting and matching the insulin - we're on levemir & novorapid at the moment.

And the other... don't beat yourself up when numbers are way too high or too low. You won't get it right all the time.

It takes time to settle into and adjust to life with diabetes and in the beginning it can be really hard for everyone but it does get better and soon you'll be an expert!

Good luck

Annette

 

[leggott]

it must of come as a terrible shock and I'm sure you are still coming to terms with his diagnosis.

Like others have said, things do get easier over time. Right now you are on a steep learning curve and life does get back to normal.

if you haven't already had info about carb counting, then speak with the Hospital about a DAFNE course. This will help you match the insulin you give to the food being consumed along with physical activity and other things.

My advice at the start would be to keep a food diary to help you pin point highs and lows in bg readings. Also to test frequently between 2 - 3 hours.

Overtime you will become the expert on your child's requirements. Diabetes should not stop your son from doing anything, although some things will take a little more planning than before.

 

[SophiaW]

First off so sorry to hear of your son's diagnosis. Our story was very similar to yours with no family history so it all came as a very big shock and a very steep learning curve as I knew absolutely nothing about diabetes. Like already has been said things do get better with time so hang in there.

To answer your question. I have found my most effective tool in dealing with my daughter's diabetes has been knowledge. In the beginning I just listened to what the consultant and diabetic nurse told me. Their advice was always good and accurate but there is only so much information that can give you in a ten minute appointment. I highly recommend a book called "Type 1 Diabetes in Children, Adolescents and Young Adults: How to Become an Expert on Your Own Diabetes". This book has been a bible for diabetes to me and is probably the most useful book I've ever bought. I also recommend reading and learning from this forum.

Knowing how to carb count is very important and something you want to learn as quickly as possible. I don't believe DAFNE is offered to children (unless that has changed recently) but your diabetes care team will more than likely have a similar course or training session available that you and your son can attend. If they haven't already mentioned it then ask them, you want to attend that as soon as possible.

 

[stoney]

Hi Tom


It looks like what I was going to say has already been said only wish to add that your son will probably still be producing some small amount of insulin whilst being diabetic and this is called the (honeymoon period) be sure to ask the DSN about this. Also you said " this was a big shock to everyone as we have no history of diabetes in either mine or my wife's families". It was the same with James as we had no history but could only say that he was very unwell at Christmas 1999 with a virus and in January 2000 he was diagnosed with diabetes prior to being 3 in the April (we believe/think this attacked his immune system). Can you pinpoint any virus prior to your Son's diabetes :?:

James is now 14 and only this February went onto Multiple Dose Injections as before that, it was 2 injections per day. The reason for multiple was, could not get control right in the mornings and this was due to puberty.

You will get a lot of help and support in this forum as I don't know where we would be without the support.

Onwards and Upwards :wink:

 

[dot]

My son was diagnosed at about the same age and I can say, hand on heart, that the thing that makes the biggest difference is not to make a big issue of it.

I am sure that you will be advised to try and develop good eating habits, fixed meal times and no snacking (unless BG levels dictate otherwise) and to make things easier this is a rule that the while family sticks to. We all live by the same rules, so although my son has to do BG tests and injections, he generally eats and behaves the same as the rest of us.

Growing boys hate anything that mark them out as different and for a long time my son hated anyone talking about his diabetes and he got really cross with us if we mentioned it to any one from outside the family. Now he is used to it - he has been diagnosed 2 1/2 years he i comfortable with being diabetic. It is part of who he is, but it doesn't define him.

Try to carry on as normally as possible, and it will gradually just become routine - like brushiing your teeth.

 

[Jen&Khaleb]

Sorry that you've joined but lovely to meet you. I have really found that having a bag packed at all times has made life fairly normal. I have everything I need for a whole day ready to go at all times. I can put the bag in the car and not have to worry about having a meter, hypo treatment, spoons and everything else one lugs about with a young child. His insulin goes in my handbag as I only keep one lot on the go at a time but I've not forgotten it yet I really like the Accu-chek Mobile Meter being all in one and not leaving a trail of rubbish.

As for pitfalls I think it is easy for children to find out that they can refuse (healthy) food and get it replaced with something else (possibly sweets). The other pitfall can be when they are doing something they love but you have to pull them away to test, feed or give insulin.

Another issue can be the pressure children feel to please their parents and when the meter shows a 20 they may feel that they have let you down. Khaleb is too young and has a disability so this isn't a problem for us but I think it is important to mention. I don't care what the meter says I will always smile and tell Khaleb what a good boy he is when he gets his blood sugar done. Even if he is low I just calmly get up and get him something to eat. He gets the same reaction from me no matter what the level, never a oh-no.

My 16 yr old son gets really embarrassed if I inject Khaleb in public but I haven't particularly cared about his feelings with this and he seems to not be so worried what other people think these days. There might be some hope of maturity.

Diabetes can be a lot of trial and error but after a while things seem to work out most of the time. I struggle sometimes when Khaleb is ill as fevers give him very high levels very quickly.

All the best with your journey into diabetes.

 

[Vikki2]

I'm really sorry to hear about your sons recent diagnosis. It's a huge shock for the whole family. My daughter is 6 and was diagnosed when she was 3. We too have no history of diabetes in the family.
There are 4 things that have changed our lives for the better and have given my daughter a pretty 'normal' life: The insulin pump, the CGM, changing my attitude & meeting other kids with T1: In the early days I was understandably really low about my daughter's diagnosis. Luckily, early on, I realised how negative I was sounding in front of her when telling others about her diabetes. With shoulders hunched and in a negative tone I would say 'unfortunately...' or 'sadly...' 'my daughter has T1 diabetes...'. I realised how bad that sounded to her and quickly changed the way I talk about it. Obviously, now that we are in a better place it is easier to sound more positive but even then I know that things changed when I stopped speaking in front of her in such a negative way.
The insulin pump has given us back our flexibility, spontaneity & normality. No more rigid times or amounts to eat.
The CGM (Continuous Glucose Monitor) has given my daughter some freedom and this coupled with the pump has enabled her to go to friends houses to play without me. It allows me to better deal with everything because it means that I now get sleep at night! The CGM makes her and us feel safe.
She now has a friend of the same age with T1 and it makes them feel that they are not the only ones. It's also great that me & my husband get on so well with her parents too.

We got our insulin pump through the NHS but after a huge fight and we are paying for the CGM but I hope to put together a case to get the NHS to take over funding.

I hope that's of some help. The early stages are tough. I wish you & your family all the best. There's so much to take in I hope I haven't just confused things for you!
Vikki