Tips For Parents – Children Recently Diagnosed With Type 1 Diabetes.
If you’ve just found this page chances are, you are a parent of a child who has recently been diagnosed with Type 1 Diabetes and you’re looking for advice. Sorry you have to be here but hopefully we can help. Here are some top tips to help you to navigate those first tricky weeks.
The first few weeks following a diagnosis of Type 1 Diabetes are tough, you will experience a wide range of emotions and everyone deals with it differently, there is no right or wrong way. You have a huge learning curve ahead and you may feel like you are living in some awful kind of bubble.
Here are some tips that I wish I’d had given to me when my son was first diagnosed in 2014.
- It does get easier I promise you. In 12 months time you will look back and you won’t believe how far both you and your child have come, in 12 short months. The day to day routine of living with Type 1 Diabetes just becomes a new type of normal.
- Perhaps the most important tip of all. Support is out there if you know where to look for it. If you are on Facebook, there are a couple of excellent support groups, where you will find help and support 24/7. Here are a couple of links to my favourites:- CWD (Children With Diabetes) & Parents Of Children With Type 1 Diabetes. Both Diabetes UK and JDRF also run various events throughout the year, they are a great way to meet other families living with this condition.
- Highs and Lows will happen. It doesn’t matter how good control is or how long you have been diagnosed, high blood sugar spikes and Hypos will happen, it’s the nature of the beast. When it happens, treat the number and move on, do not feel guilty, it doesn’t mean you are doing a bad job. Remember this is a marathon not a sprint.
- Use your team. Your team are there to help and support you. They are there to ensure you can get the best blood glucose control possible. As I’ve said highs and lows will happen but when they become a pattern or even the norm it’s time to speak to your team, as changes to insulin may be required. Don’t wait till your next clinic appointment, those who get the best control are making changes regularly.
- Education is key. Learning as much as you can about Type 1 Diabetes will not only help you to improve blood glucose control it’s also very empowering. As well as the support groups I’ve already listed, there is plenty of great reading available, on various websites and books too. The following 2 books are highly recommended. Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas is considered to be the Type 1 Bible. Think Like A Pancreas by Gary Scheiner is also excellent.
- Embrace Technology. Chances are you’ve left hospital with some injections and a blood glucose monitor. Other technology is also available, technology designed to give you better control but also to improve quality of life. There are blood glucose monitors that can help with insulin doses, there are some that require less blood than others. Insulin Pumps are hugely popular and are usually available through the NHS. They deliver insulin without a need for injections, whilst they might sound a bit scary, primarily they are designed to improve quality of life, as children can go back to eating in a less regimented routine and having no injections is a clear bonus too. Insulin pumps can also improve blood glucose control. Also available are Constant Glucose Monitoring Systems and Flash Glucose Monitoring Systems but often they need to be self funded. There’s no hurry though learn about these options in your own good time.
- Keep a positive attitude. Whilst this might sound easier said than done particularly in the first few weeks, when you go through a wide range of emotions, a positive attitude really will make a difference to you and your child in the long term. Hopefully as you pass through the raw emotions of the first weeks, eventually you will get to the Acceptance Stage. Once you accept the condition and learn to live with it, moving on with life, the whole family will be much happier, your positive attitude will help your child to also accept the condition. You will still have hard times but if you find yourself struggling with this reach out and get help. Many hospital teams can offer you and your child the support of a Psychologist. Don’t be afraid to use them.
- There are some positives. Yes, I really did write that. In this first year you will discover just how strong both you and your child really are. They will amaze you with their strength and just when you thought your capacity to love them couldn’t get any bigger, it does. They will make you so very proud of their daily bravery. This condition can make your family stronger and closer than ever. If you also take advantage of the support that is out there you will meet some amazing people on this journey.
- Your child can eat sweets. I remember a dietitian telling us my son wouldn’t be able to eat Haribo ever again. He was mortified. This is a myth. Our children can eat whatever they want, just like other children can, you just need to make sure you give the right amount of insulin for them. This is easier once you have mastered carb counting.
- This is not the end it’s a new beginning. Type 1 Diabetes doesn’t have to hold your child back. Through planning, experience and learning you can tackle every situation that life throws at you. In the words of our consultant on diagnosis “You will become the expert, and there is NO reason why your child should not go on to live a long and full life” Life really does go on!
This was just 10 things I wish I had known. If you want more Diabetes UK have just launched a free book called 100 things I wish I had known about living with Diabetes. You can order your free copy here.
I hope you’ve found these tips for parents of a child recently diagnosed with Type 1 Diabetes useful and that you’re feeling better about tackling what is ahead of you. You can and will do this. I know that parents of children with Type 1 Diabetes are amongst the strongest of warriors. Hey, we are the Captains of the Insulin Army. The finest army in all the land. Before you go though, don’t forget to sign up for our free newsletter via email. Just pop your email address in the box below.
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What a wonderful page. I have just sat here and cried all the way through reading this. But this has given me a sense of belief that things will get easier
Thank you
Julie McDonald
Awww Julie. You will definitely get through this. We are 2 years in now and the first few weeks i just spent in a bubble trying to be strong. Now it’s just a part of life for all of us, it’s brought us closer together and taught me so much. Jack just finds it a bit of a faff sometimes. Just grit your teeth and reach out for support when you need. Good luck.
Hi I love this post my daughter is 6 months down the line of living with type 1 diabetes but nothing stops her doing all the thing she used to do before just got an insulin pump on Friday so this is our new learning curve love Sara and Sophie from York xx
Thank you. Good luck with the pump, I hope your daughter loves it as much as my son loves his. Once the settings were right life became more normal for us, and he coped with it all so much better than with injections.
I also did a similar post to this last year. Here are my tips. https://motherbetic.wordpress.com/2015/05/30/top-ten-tips-for-parents-of-newly-diagnosed-t1-child/
My daughter is diagnosed few weeks ago and she is only 2. We are very worried parents and it’s seems very hard to manage. Biggest question is can we manage and will it get easier. Frequent testing and shots make it very hard for a young child, no child should go through this and to be honest surprised to see so many kids go through this.. Hoping for a cure soon.
This is such a helpful post for those newly diagnosed. Exactly what I needed to read when we were diagnosed. One day at a time, and allowing yourself to grieve is the only way at the beginning, but it’s always good to hear from others that things will feel better. And they universally do.