Diagnosis – the first injection

After being told Amy had type 1 diabetes we were given some time to be together before one of the wonderful DSNs came back to enquire whether Amy was hungry as it was now dinner time. She was hungry, as she had been for the last couple of weeks.

Her dinner order was taken and it surprised me that she was immediately offered what we call ‘weekday food’ or more to the point ‘crappy food’, consisting of things like Smilies, which most 10 year olds like Amy adore. Of course I had the common misinformed opinion that type 1’s couldn’t eat certain foods and I guessed ‘crappy food’ fitted that bill.

We were transferred to the room which was to become Amy and Jane’s room for the night and a second DSN came in, saying that dinner would be ready soon and Amy needed insulin. It was all handled very, very well, with calmness, control and bucket loads of support from the DSNs. I really liked how everyone focused on talking to Amy, not the parents; it made complete sense but I’d rarely witnessed this before.

Then the horrible question came from the DSN: “Amy, who would you like to do your injection?”. I shuffled forward in my chair expecting to do it – remembering Amy’s fear of needles and Jane’s fear of blood – before I was stunned by Amy’s response.

“If I’m going to have to do this for the rest of my life I might as well start now.”

Waves of amazement preceded waves of pride which preceded waves of tears.

It was quite a slow process but she did it. I was so proud.

Diagnosis – a Father’s viewpoint

Whenever I think back to Amy’s diagnosis there’s a part of me which harbours a nagging doubt about whether a particular event played any part in the start of the autoimmune destruction of Amy’s pancreas. I know what the doctor’s say, that it just happens and you can’t do anything to stop it, but surely they’re wrong: if a person doesn’t get ill in the first place the autoimmune system won’t attack the pancreas. I guess we’ll never actually know until they pinpoint exactly the cause of type 1 diabetes.

Amy had been ill with the usual cold/man-flu/call-it-what-you-will which afflicts most people as soon as kids go back to school, the days get colder and the heating gets switched on. I had tickets for her and me to go and see her first ever gig, the dance act Pendulum at the BIC in Bournemouth on the 7th December 2010. During the week before with Amy still suffering we debated on whether or not she should go but I put my foot down and insisted it was only a cold. If you’ve never been to a Pendulum gig watch this and you’ll understand just how hot you get – by the end of the evening we were completely soaked (I know, euw!). It was a late night out for Amy so to help her stay awake we bought and consumed lots of her favourite orange fizzy drink. It was full on sugar. She was still quite poorly a few days later.

Back to the diagnosis story.

On the 28th December 2010 Emilia and I went to see Southampton FC demolish Huddersfield 4-1 and returned in bouyant mood to hear about Jane and Amy’s shopping trip and the impending visit to the Doctor. Diabetes was briefly discussed and a quick Google confirmed what I already knew, that if Amy had diabetes it was type 1 and that meant injections for my little girl who has a fear of needles. I was devastated at that possibility.

The next day Jane and Amy went to the doctors – read the Diagnosis post – whilst Emilia and I stayed at home. When Amy went to see her friend about the party Emilia and I stayed at home and that’s when the phone rang.

I took the call which said we needed to go to the hospital that afternoon, at 3pm. Emilia had stuff to do and didn’t want to come to something that was a routine appointment so I (somewhat harshly) told her the reality of what the visit was likely to mean and the daily injections which Amy would have to endure. You don’t get a call back so quickly if everything’s okay.

During lunch I watched Jane, she seemed so calm, I couldn’t understand how. We left for the hospital, totally unprepared for an overnight stay, they could have warned us.

In the consultation room we all sat down as the DSN spoke to us. I could see it in her eyes already, clearly breaking news like this didn’t come any easier through repetition, and I just waited for the words ‘type 1 diabetes’. I looked at Amy and Jane and there wasn’t much of a reaction; Emilia, like myself, looked full of tears, as did the DSN.

The next hour or two was a blur. I’ve no recollection of what happened next.

It was dinner time and Amy needed to inject insulin, or bolus as it’s really called, and she opted to do it herself. I was so proud, she was only 10.

Emilia and I left to go and get some pyjamas for Amy which meant a trip back home. We knew that the local Marks and Spencer’s would be open so we decided to buy Amy some next pyjamas as a treat. After some food and back at the hospital and Amy seemed okay but had clearly shed a few tears. I gave some food to Jane, spent some time cuddling and talking and left my little girl and her Mum to spend the night in hospital.

Diagnosis – 29th December 2010

Amy was diagnosed with type 1 diabetes on the 29th December 2010, aged 10. It was an open and shut case, no possibility of it being anything else.

When I look back now I can see that she displayed many, if not all, of the classic signs of someone with type 1 diabetes. Of course, back then we didn’t what they were or what to look for.

STOP (for a moment): Do you know the classic signs of someone with undiagnosed type 1 diabetes? If not, please take some time to view this excellent video by Diabetes UK and JDRF.

The day before, Amy and Jane had gone shopping but just before going Amy drank a lot of water. In the shopping centre she needed the toilet, then said she was very thirsty, she was trapped in a circle of constant drinking and urinating, a first circle of blue. A classic sign; we didn’t know.

Clearly something wasn’t right.

Jane had previously spoken with one of our good friends who mentioned the possibility of diabetes but it wasn’t until Amy started drinking pints of water that Jane recalled the conversation. The appointment was booked for the 29th at 10am, a few hours before Amy was due to go to her best friend’s birthday party.

Our doctor didn’t need time to ponder the options and after testing for ketones and her blood glucose level he called the hospital quickly, saying that they’d call us if we needed to go in, but he’d see if any visit could be postponed until the 30th so Amy could attend the party. Afterwards, Jane and Amy went to visit the birthday girl just to let her know that she might come, she might not.

A few minutes later that bloody phone rang. My heart sank.

At the Royal Hampshire County Hospital in Winchester hospital we went into Sophie’s Place, an area created by the charity Sophie’s Appeal in memory of little Sophie Barringer who lost her life to Wilm’s Disease in December 2004, aged six. Jane was her teacher.

A nurse did another few tests and discussed some personal history, asked about Amy’s symptoms and checked her blood glucose again. We were led into a consultation room by the DSN (diabetes specialist nurse) who started chatting with us, but at the time I felt like it was small talk, just some calm before the storm.

Then a word we didn’t want to hear was spoken, it started with ‘D’, it ended with tears.

Amy didn’t know what it really meant. Jane didn’t know what it really meant. I glanced at Emilia, we both knew exactly what it meant. I glanced at the DSN, her eyes were watering.