This past January, our lives took an unexpected turn when our bright, energetic 11-year-old daughter, Olivia, was diagnosed with Type 1 diabetes. Looking back, the signs were there, subtle at first, but escalating in the months leading up to that Wednesday, January 29th.
What started as unrecognised symptoms around Halloween evolved into a rushed emergency doctor’s appointment, a dash to A&E, and an immediate hospital admission. Her blood glucose level was a staggering 31 mmol/L – far beyond the average range of 4-7 mmol/L.
It was a shock, a whirlwind of information, and an emotional rollercoaster. For any parent going through something similar, or for those who want to be aware, we wanted to share our experience, shed light on the symptoms of diabetes, and offer some advice for those incredibly challenging first few months.
Recognising the Signs: What We Missed (and What You Should Look For)
Looking back, Olivia was exhibiting the classic “4 T’s” of Type 1 diabetes, which we now know are crucial to recognising early:
- Thirst (Polydipsia): Olivia was drinking an incredible amount, constantly asking for water, and seemed unquenchably thirsty. We put it down to her being active, but in hindsight, it was excessive.
- Toilet (Polyuria): This goes hand-in-hand with thirst. She was going to the bathroom frequently, including getting up multiple times during the night, which was very unusual for her.
- Tired (Fatigue): Olivia, usually full of beans, was becoming increasingly lethargic. We thought she was just going through a growth spurt or perhaps the stress and workload of school was too much, but her energy levels plummeted.
- Thinner (Weight Loss): Despite eating regularly, Olivia started to lose weight. This wasn’t obvious at first but became apparent after comparing photographs of her over the months leading up to her diagnosis. It turned out to be significant and unexplained.
Other symptoms Olivia displayed include:
- Increased Hunger (Polyphagia): Despite eating more, weight loss can still occur as the body struggles to use glucose for energy.
- Blurred Vision: High blood sugar levels can affect the lenses of the eyes. This happened on a few occasions and we got her eyes tested. On the day of those tests, her eyesight was perfect.
- Fruity-Smelling Breath: Olivia told me she experienced this 2 days before her diagnosis. This can be a sign of diabetic ketoacidosis (DKA), a serious complication that occurs when the body starts breaking down fat for energy, producing ketones. Olivia’s high blood sugar indicated she was heading towards DKA, which made her immediate hospitalisation critical.
- Recurrent Infections: High blood sugar can weaken the immune system.
The First Few Months: A Parent’s Guide
The initial period after a Type 1 diagnosis is intense, overwhelming, and requires a steep learning curve. Here’s what we’ve learned and some advice we hope will help other parents:
- Embrace Education: The hospital team will provide a wealth of information – take it all in. Ask questions, no matter how small. Learn about carb counting, insulin types, injection techniques, blood glucose monitoring, and how to manage highs and lows. We found it helpful to keep a notebook for all the new information.
- Build Your Support Network: You are not alone. Connect with other parents of children with Type 1 diabetes. Online forums, local support groups, and diabetes charities (like Diabetes UK) are invaluable resources for sharing experiences, tips, and emotional support. We have a registered Charity called TIDCAT in our local area that provides support and arranges outings and events for families.
- Establish a Routine (and Be Flexible): Consistency is key in managing Type 1 diabetes. Establish a routine for blood glucose checks, insulin injections, and meal times. However, life happens! Be prepared to be flexible and adjust as needed, especially when managing illness, exercise, or special occasions.
- Master Carb Counting: This is fundamental to managing insulin doses. Invest time learning how to accurately count carbohydrates in everything your child eats. Food scales can be an incredibly helpful tool alongside the Carbs & Cals app.
- Understand Insulin and Its Action: Learn the different types of insulin your child is prescribed (e.g., rapid-acting, long-acting) and how they work in the body. This knowledge is crucial for making informed decisions about dosing.
- Hypo and Hyper Management: Learn the signs and symptoms of low blood sugar (hypoglycemia) and high blood sugar (hyperglycemia) and, crucially, how to treat them effectively. Always have fast-acting carbohydrates (like glucose tablets or juice) readily available for hypos.
- Communicate Openly with Your Child: Olivia wasn’t scared by her diagnosis but she had lots of questions. We made sure to talk to her openly and honestly about her diagnosis, empowering her to understand what was happening to her body and why these new routines were necessary. Involve them in the process as much as they are able.
- Prepare for School and Social Situations: Work closely with the school to develop a diabetes management plan. Educate teachers and staff on how to support your child, including administering insulin, recognising hypos, and supervising blood glucose checks. Discuss how to handle birthday parties and other social events with friends and their parents.
- Allow for Grief and Adjustment: It’s okay to feel sad, angry, or overwhelmed. A diabetes diagnosis is a life-altering event. Give yourself and your family time to grieve the loss of what was, and to adjust to the new reality.
- Celebrate Small Victories: Every successful blood glucose reading, every correctly carb-counted meal, every moment of resilience from your child – celebrate them! This journey is a marathon, not a sprint, and acknowledging progress is vital for morale.
Olivia is now navigating her new normal with incredible bravery and resilience. It’s a steep learning curve for our whole family, but we’re taking it one day, one carb count, and one injection at a time. If your family is facing a similar diagnosis, please know that you are strong, you are capable, and there is a vast community ready to support you.
UK-Wide Diabetes Resources:
- Diabetes UK: This is the leading charity for people with diabetes in the UK. They offer a vast array of resources, including:
- Website: https://www.diabetes.org.uk/ (Highly recommended for comprehensive information on all types of diabetes, symptoms, management, research, and living well).
- Helpline: 0345 123 2399 (Monday to Friday, 9am to 6pm) – for confidential support and information.
- Online Forum: A vibrant community where people with diabetes, their families, and carers can share experiences and advice.
- Local Support Groups: They have groups across the UK, which can be invaluable for connecting with others in your local area.
- Learning Zone: Online courses and tools for managing diabetes.
- Together Type 1: A specific programme for young people aged 11-25 living with Type 1 diabetes to connect and find support. You can find more about this on their website.
- Breakthrough T1D (formerly JDRF UK): This charity is specifically focused on Type 1 diabetes research and support.
- Website: https://breakthrought1d.org.uk/
- They offer free information packs for newly diagnosed adults and for parents and carers of children with Type 1.
- They also have a resource hub with articles, stories, and videos, and run events to connect families.
- DigiBete: This is a fantastic platform with video resources and an app designed specifically for children and young people with Type 1 diabetes and their families. It’s often recommended by NHS diabetes teams.
- Website: https://www.digibete.org/
- NHS Website: The official NHS website provides reliable health information.
- Type 1 Diabetes support: https://www.nhs.uk/conditions/type-1-diabetes/support/
- Diabetes.co.uk: A large online community and information portal for people with diabetes.
- Website: https://www.diabetes.co.uk/
- They have active forums for various diabetes types, including a dedicated Type 1 diabetes community.
Northern Ireland Specific Diabetes Resources:
In addition to the UK-wide organisations, here are some resources with a specific focus on Northern Ireland:
- Diabetes UK Northern Ireland: This is the Northern Ireland branch of Diabetes UK, offering localised support and initiatives.
- Website: https://www.diabetes.org.uk/in_your_area/n_ireland
- Live Well Hubs: These provide local, in-person support and information sessions in various locations across Northern Ireland (e.g., Bangor, Belfast, Ballymena, Lisburn, Mid Ulster, Newry). You can find dates and venues on their website.
- Together Type 1 Northern Ireland: Their youth programme specifically for 11-25 year olds with Type 1, offering events and peer support.
- Email: n.ireland@diabetes.org.uk (for general enquiries to the NI team)
- NI specific helpline: While the main Diabetes UK helpline (0345 123 2399) serves NI, some resources mention a specific NI contact for the helpline, but the main one is the primary point of contact for England, Wales, and Northern Ireland.
- HSCNI (Health and Social Care Northern Ireland) – Diabetes Education: Various Trusts within the HSCNI offer structured education programmes.
- Northern Health and Social Care Trust Diabetes Education: https://www.northerntrust.hscni.net/services/diabetes-services/diabetes-services-and-classes/ (This page details programmes like DAFNE for Type 1 and DESMOND for Type 2, along with other services).
- It’s worth checking the specific website for your local Health and Social Care Trust (e.g., Belfast Health and Social Care Trust, Southern Health and Social Care Trust) for their diabetes services and education offerings.
- The CHOICE Programme (Diabetes & Me): This program is specifically designed for children and young people (up to 19 years) with diabetes in Northern Ireland, aiming to equip them and their families with the skills and knowledge to manage their diabetes effectively.
- Website: https://www.familysupportni.gov.uk/Service/6557/health-and-wellbeing/diabetes-me–the-choice-programme (This page provides an overview, and you should speak to your diabetes team for more information or referral.)
- T1 Club (Type One Club): A grassroots support group established in the North-West area of Northern Ireland for young people with Type 1 diabetes and their families.
- Website: https://www.t1club.co.uk/
- They offer a WhatsApp parents’ group and monthly activities for families.
- T1DCAT (Type 1 Diabetes Children And Teenagers): A parent-led group providing support to families and raising awareness within the Northern Ireland Southern Trust area.
- Website: https://www.t1dcat.org/
- They organise activities and events for young people and offer support to parents through shared experiences.