Not even type 1 diabetes can stop a kid like Dani – Part 2.

March 2019

Following on from Part 1 recently published on our website, we were very privileged to speak with Dani’s mum, Kelsey, recently. She was kind enough to spend time with us to share the family’s experience of Dani’s arrival, their decision to join ENDIA and the impact of type 1 diabetes on the family.

Life before Dani: Kelsey and Tim have worked alongside each other as station hands for years. When Kelsey found out Tim had type 1 diabetes, she had never heard of it and really didn’t know what it was. She soon discovered that his blood sugar levels were poorly controlled; regularly having highs and lows and being upset and cranky with both. Kelsey took him to their GP for some “re-education”. And after 6 years of arguing about it, Tim agreed to try an insulin pump. Kelsey describes it as “an amazing contraption” as it makes life so much easier. When he first started using the pump, his HbA1C was 8.9. Three months later it came down to 8.1 and a subsequent 3 months it was 7.6.

Kelsey had some idea that there was a genetic risk when she became pregnant. They just didn’t expect the risk to be realised so young.

Involvement in ENDIA: Kelsey heard about ENDIA through Facebook. At that stage, Dani was 3 months old, so they missed the pregnancy element of the study, but still felt that every child may help contribute important information and find some answers. Because the family live in regional Queensland, they enrolled into the Regional Program which meant remote follow-up with nurse, Sarah, every 6 months. This still meant going to a pathology service about an hour drive away for blood tests and sample collection which was then packaged up in a bio-bottle and sent via courier to Sarah and the lab in Adelaide for analysis.

In January 2018, Dani had a blood test which came back positive for insulin autoantibodies (IAA). Kelsey received a call from Sarah saying that Dani had a positive result but that it could mean a number of things, including just a transient positive result. They would just wait and see what the next blood test showed in July. The “wait and see” was the hardest part of participating in ENDIA according to Kelsey. Dani was excellent with blood tests and really not bothered by them. Her parents might give her a chocolate freckle or a very small treat after to make it a positive experience.

However, Sarah rang the family again with a second positive antibody result in September. ENDIA tests for four different antibodies (IAA, ZnT8Ab, GADAb, IA2), and the one that was raised in January (IAA) was normal, but this time the other three antibodies were all raised. Sarah told Kelsey that this was an indication that Dani was at risk for developing type 1 diabetes; known as the pre-clinical stage or stage 1 of developing the condition. The ENDIA nurse asked if Dani could have bloods taken every 3 months to keep an eye on her. Sarah sent some information for her parents and their GP about early signs and symptoms to look out for. This also came with an action plan to follow if Dani started to show any of these symptoms. Kelsey said the information was really helpful and Sarah was “amazing”.

Dani had a blood test in October 2018 for ENDIA. She was “perfectly well and a happy, healthy little girl”. At the time, Dani’s HbA1C was within normal range.

Diagnosis: Looking back, about 6 weeks before diagnosis, Kelsey recalls that her daughter started to wet her night nappies after being dry for some months. Kelsey just put this down to “a phase”. One day late in November, they had a road trip driving in an air-conditioned car and Kelsey noticed that Dani had drunk about 1.5L of water which was very unusual for her. Some days later after her swimming lesson, Dani wouldn’t touch her blueberries (her favourite food) which was very unusual. So that night Kelsey just thought she might check her blood sugar level using Tim’s testing kit, and her level was 14.8.

Kelsey rang her GP and organised an appointment the next day. The GP gave her a meter to monitor her blood sugars for a few days before and after meals. Whilst there, the GP decided to test Dani’s urine and found it to be positive for ketones (when cells don’t get enough glucose, the body burns fat for energy instead; this produces a substance called ketones). Ketones can be a sign of DKA (Diabetic keto-acidosis; a build-up of acids in the blood related to prolonged high blood sugar levels). For further advice, the GP rang the Queensland Children’s Hospital and they said to bring her to the Emergency Department as soon as possible.

After an hour drive home to pack a bag and a 6-hour drive later to Brisbane, Kelsey and Dani arrived at the hospital about 9pm that same day. Kelsey said that she cried the entire way there. By 10pm, Dani had been diagnosed with type 1 diabetes by the attending emergency doctor.

Dani teaching her Grandma how to look after Rufus Bear in hospital.

The doctor said they had never seen a case so early and the child so well. Kelsey was relieved to learn that Dani had avoided DKA. Dani was started on an insulin pump. “The Dexcom is amazing; it’s so much easier to predict and control for those ups and downs”. It’s the same one that Tim uses, so the family found it very easy to use and adapt to. Her endocrinologist said that because Dani had been diagnosed so early, her blood sugar control will likely be good in the future and she is more likely to stay the happy and healthy little girl that Kelsey and Tim knew her to be.

Dani and T1D: Although Dani often has a tantrum with her set changes, she has adapted incredibly well. She likes to do her set changes when her Daddy does them. And in fact, Mum has to use the spare one they have in the house as well so that she doesn’t miss out. As we spoke with Kelsey, Dani wanted to check her blood sugar and did her own finger prick (4.8 if you were wondering).

Dani zipping around the hospital ward around the time of her type 1 diabetes diagnosis

Take home message from Kelsey: “We joined ENDIA to help contribute to research into type 1 diabetes, because we knew there was a genetic risk for Dani. We thought the study might help to predict issues; which it did. It gave us a heads up to keep an eye out. We are so grateful for being part of ENDIA, that Dani didn’t get sick before her diagnosis and for the amazing support and information provided by Sarah (the ENDIA Regional Program Nurse).

I understand that some parents don’t want to have blood taken from their children; it’s not fun. But for us, it was worth it. Although it’s not a good situation to be in, at the hospital we met a little girl diagnosed with hyper-insulinism (too much insulin) and we felt lucky. We felt lucky because at least type 1 diabetes has a clear treatment plan and options. And because Tim has it, we know more about her pump, diet and general care. For that little girl, the treatment is unclear. If participation in ENDIA brings us closer to an answer, then we’re happy.”