DRWF Events: Missing all the classic symptoms of having type 1 diabetes

Funky Pumpers founder Debbie Jones on when her son AJ was diagnosed with type 1 diabetes.

My son Adam (known as AJ) was diagnosed with type 1 diabetes on 23rd May 2005. Our diagnosis “story” is sadly very similar to the one told by many parents, in that all the classic symptoms of having type 1 diabetes were missed numerous times by our GP.

AJ had been feeling very unwell. My husband and I had separated the year before, and between us we took AJ to the doctor four times in a 10-day period, as we both knew something was very wrong.

Thirsty and tired

AJ was incredibly thirsty. I remember buying three litres of diet cola and he drank them all in one evening. I actually told him off for doing that, as they were supposed to last a full week. He just could not quench his thirst. I still feel incredibly guilty to this day for reprimanding him about drinking all the diet cola.

 AJ was also incredibly tired. He was literally so tired that his brother would be asking him to go on the trampoline in the garden and AJ would walk out there but not have the energy to even get on the trampoline. He would come straight back in to lie down with exhaustion. AJ was going to the toilet constantly, but this was put down to all the drink he was consuming. He was also noticeably losing weight.

Kevin (AJ’s father) took AJ to the doctor for the fourth time on Friday, 20th May.

The doctor sent AJ away for full bloods at the local hospital, telling Kev to wait a few days for the results. Kev’s family lived in North Wales and Kev had arranged to visit them that weekend, so after the blood tests he drove to see his family with AJ asleep in the car.

A doctor’s receptionist phoned the home phone late on the Friday; our other son, who at the time was 18, answered. She asked to speak to Kev, but was told he was away for the weekend, so the message left was: “When he gets back ask him to phone us”.

Over the weekend Kev phoned me and said AJ had got much worse, that he just wasn’t staying awake and was sleeping the whole time.

Kev cut his trip short and came back on the Sunday. By Monday morning we decided that we needed to get AJ to hospital. As Kev was leaving the house at about 7.30am the GP phoned, he sounded really worried, he asked why AJ wasn’t in hospital? Kev said he was on his way there now. Apparently, the receptionist should have told our other son that the bloods showed AJ needed to get to hospital and they were waiting for him, but that wasn’t the message she relayed.

On arrival at the hospital AJ was put straight onto a drip and very closely monitored. He was in severe diabetic ketoacidosis and all his internal organs were struggling to cope and had started to shut down. It was a very traumatic time.

As parents, the actual “diagnosis” is hard to comprehend, although for us it was a double-edged sword.

We felt “relief” to finally have a diagnosis, which sounds bizarre, but we knew AJ was really ill and finally we had been “listened to” and not fobbed off with: “It’s just a nasty virus”. To get a diagnosis at least meant AJ could get treatment, but then the diagnosis carried its own horror story of being a lifelong chronic condition with life-changing implications of constant testing of blood glucose levels, monitoring foods for the carbohydrate, protein and fat content and continuous insulin dose calculations.

A type 1 diabetes diagnosis in the family affects the whole family. It is obviously a huge shock to the child, but it is also a huge shock to the parents, siblings, grandparents and the wider extended family and friendship groups.

If a child is going to manage their type 1 diabetes well, then they need an amazing support network to understand and aid them. AJ is lucky; our family have always been close and everyone has continued over the years to not only be interested in AJ’s type 1 diabetes, but to genuinely care and show him support.