What is your child’s diagnosis story?
It all started eight months before the diagnosis in January 2015, though at that point we had no idea what was wrong. I went to see Noah’s GP and told him I wanted his immune system checked because something felt wrong. The doctor argued that this was too invasive based on just a feeling. Instead, it was decided that if Noah got sick again, then some tests could be run. During the next few months, his health peaked and troughed, but each time it was never serious enough for more tests. Within a few months, it was becoming clear he was deteriorating, however, each time he appeared to recover before anyone could put their finger on it. Then he started showing classic diabetes symptoms: drinking huge amounts of water and wetting himself despite wearing nappies; refusing to climb stairs or walk for longer than a minute or two; blinking his eyes a lot while watching TV and his mood swings became erratic. This all sounds obvious now, but the signs were never all there at exactly the same time.
Seven months later, in August, we took him back to the GP with the same concerns. This time they did a urine test. It came back positive for an infection and we were given antibiotics. We were also told to go back to Noah’s pediatrician at the hospital because Noah had a history of urine infections from when he was born. Four days later, we got a strange phone call from the GP telling us it wasn’t a urine infection after all; that we should stop the antibiotics and there was no need to go back to his pediatrician. I ignored this advice completely and kept the appointment at the hospital. When we discussed our concerns with his pediatrician she also couldn’t find any problems. She took another urine and blood sample and told us to spend the next two weeks putting weight on Noah; feeding him chocolate milkshake, full fat milk and whatever he wanted to eat to get his weight up. If that didn’t work, they would run more tests.
The next day, we left town for the weekend but Noah was not himself at all. He had huge black circles round his eyes, he was wetting himself even during the day, sleeping all the time and he didn’t want to move or eat at all. On Monday morning, we received a call from his pediatrician: she had missed vital signs and the urine had come back with excessive amounts of glucose in. We were told to bring him to A&E immediately. Noah’s blood sugars were 35.6 – just under 5 points away from a diabetic coma. He was a very sick little boy.
How did you feel when you heard the diagnosis ‘Type 1 Diabetes’?
This is going to sound ridiculous in hindsight but I was relieved. I had been worried that he had coeliac disease. Some friends of ours have a kid with this disease and it looked really tough to deal with. Cancer had even run through my mind too; panic does that to you when faced with the unknown.
There was also a profound sense of relief in finally hearing a diagnosis. It hadn’t all been in my head, I hadn’t been an over-worried Mother after all. I had done the right thing, I had trusted my instincts and spoken to his GP months ago. None of that sunk in at that moment of course, but I was certainly relieved to know I hadn’t been going crazy.
Finally, there was a sense of relief because I recognized the name ‘Diabetes Type 1’ and that felt safe for some reason. My initial reaction was ‘OK, I have heard of that, that’s fine, I can deal with that, not cancer so let’s crack on then!’ I reacted very calmly to the words the doctors were saying but I couldn’t understand why everyone in the room was looking at me with such sympathetic expressions. I was feeling relieved – why weren’t they?
I. Had. No. Idea. This feeling of relief was just a blip on the curve, the calm before the storm.
In your opinion, how could improvements be made to the diagnosis process in the future?
After some time had passed, following Noah’s diagnosis, Kasper and I were getting to grips with the practicalities of treating a diabetic child night and day. Events and conversations started to fall into place and, just as we had been warned by the Diabetes Clinic, our brains were beginning the process of moving from shock, through denial and into frustration. We decided to sit down with Noah’s GP and discuss where it all went wrong. Following that discussion, the GP practice have informed us that they have implemented a new standard urine blood glucose check for any patient (especially babies and children) presenting with similar symptoms.
It seems like such a minuscule check doesn’t it? Dip a stick in a pot of wee and figure it out from there – but that is actually as simple as it can be. If they had done this check on Noah weeks before, when we went in with his symptoms, they would not have misdiagnosed him, and they would have saved his little body weeks of agony. I am pleased we have made this small but important step, though there is more that can be done.
If you could share one piece of advice to other (non T1D) parents around the world, what would it be?
Trust your instincts. They are real and they are powerful. They exist at the core of our human nature and they kept our race alive thousands of years ago; they exist today still. Don’t let society, well-intentioned friends or family talk you out of what your gut is trying to tell you. If you think something is wrong with your child, then be happy to (potentially) waste 5 minutes of your GP’s time. Two GP’s and a pediatrician missed Noah’s diagnosis. Each time I was sent away with nothing, but I didn’t give a fig about wasting their time. I just remained concerned for my son and I kept plugging away because my instinct wouldn’t shut up!