Being misdiagnosed, a Type1 Mum's story...

When I think back on my son’s diagnosis, I have the same feelings that I imagine most people do when their child is unwell: sadness, worry, even fear. But the overwhelming feelings that I have when I think back to that time is anger.

Well, anger and guilt. Guilt that I didn’t push harder from the start, but mostly anger (verging on fury) that despite going to the clinic again and again and again and AGAIN, that it was just by chance that we finally got a diagnosis.

It was in late August that I first noticed that my little guy wasn’t quite himself, he was getting fatigued earlier than usual, he would come home from kinder and fall asleep. He was moody which was out of character and he had lost weight. He had always been slim, but he was starting to look bony, so I started to feed him larger meal portions, and thought that he was probably adjusting to having a new little sister.

September became quickly and unseasonably hot and once we had started to peel off the layers it became apparent that my attempts to feed him up had not helped him gain any weight. One day at the pool, he sat down to take off his shoes, and in the bright sunlight I was shocked by his weight loss. I could not only see his ribs, but every notch in his spine. When I look at photos of him from that time, I can see it so clearly, but when you see someone every day, you miss the gradual changes.

After noticing this drastic loss, I booked into what would be the first of many visits to our local Doctor’s clinic. Our usual Doctor was on leave, so we saw another Doctor in the same centre. He reassured me that the weight loss was probably due to him being more active at kinder and that by feeding him more I was on the right path to improving his weight.

The next week the kinder teacher took me aside with concerns that my son had become withdrawn, he was not engaging in the games that he usually enjoyed playing with his friends and he would not get involved in class discussion. She asked if anything was going on at home because this was so unlike him. I reassured her that all was well, and hoped that this might be a stage he was going through.

Within a few more days, some other changes in his behaviour began to emerge and I really began to worry. He began to stutter - or not stutter exactly, but repeat the end of each sentence, the end of each sentence (see what I did there?). He started to become slightly cross eyed and struggled to focus. He was drinking more than usual, and the thought of Type One Diabetes began to form in my mind. I allowed him to drink as much as he needed, because the weather was so hot and I thought, “his body knows what it needs”. Then bed wetting became an issue again – something he hadn’t done in years.

Back to the clinic we went, I saw a different Doctor, and broached the subject of Type One Diabetes, but was advised that as it didn’t run in the family, his symptoms were probably just due to the weather and his age. The Doctor advised that as the kids at kinder were starting to talk about school next year, some became anxious and these symptoms would often present. He suggested I “just relax” and reassure my son about school, then the bed wetting and behavioural changes would resolve themselves. I was not really satisfied with this answer, but felt like I was being silly for making a fuss over what was apparently quite normal.

A few days later, he was crying in the toilet, because urinating was painful. He was going so often that the skin had become inflamed. At the clinic, we saw yet another Doctor who put down his previous symptoms and behaviour to a UTI and prescribed him antibiotics. Before that day I wasn’t even aware that boys could get UTI’s… The Doctor attempted to comfort me - “No need for you to worry yourself Mummy.” I felt patronised, and I began to doubt whether they were taking my son’s symptoms seriously. But I also questioned whether I was becoming ‘One of those Mothers’.

After the prescribed UTI meds had had little effect on his water intake, I asked my husband to take him into the Doctor instead. I hoped that if a father took him in, they might take our concerns more seriously, but he was just told to keep going with the antibiotics.

At Kinder…

The next week, I was driving my son home from kinder (a 4-minute drive) when the little man said he needed the toilet, “NOW!” I only had time to pull over and get him out of the seat before he wet his pants. I did a quick change before starting to drive home again when he asked for more water. When I said “We’re nearly home buddy, you can have some when we get back”, he started sobbing, “I’m just SO thirsty Mummy…”. When I got home, I started researching again. Type One Diabetes just kept coming up. It just fit. I booked into the clinic after Kinder the next day.

The next day was a particularly hot day, and on our way home from Kinder, my son fainted. He quickly came to, and I had a cold drink for him, so I rang ahead to the clinic and asked if he could come in a little earlier for his appointment, they were unable to schedule him in, but he had come round and was lucid - and as the appointment was in 40 minutes - they suggested we wait in the waiting room. It was a frustrating and worrying time. He had never fainted before, but I felt reassured that we were surrounded by doctors if anything should happen.

During the consultation with yet another different Doctor, I again expressed concerns that he may have Type one diabetes. Now, I don’t know what was on my file, but the Doctor seemed aware that I had suggested this before. He became somewhat frustrated and advised again that it was highly unlikely and that his symptoms were probably due to the very hot weather and my son’s age. I mentioned that I had looked up his symptoms and that they all seemed to line up. I also said that online it mentions that there isn’t always a family connection. He found this very amusing, had a bit of a chuckle and told me to stop using “Google Doctor”. He stood up and walked to the door, indicating that we had come to the end of our consultation, in his hand was a sample jar, which he gave to me and said: “If this will put your mind at ease… Get your son to provide a urine sample and we will test it for you. Bring it in any time in the next few days…”. With that he ushered us out of the door.

“The next few days…” No urgency, he was just trying to calm a neurotic, overly-anxious mother. Needless to say, I felt stupid, I felt ashamed, like I was wasting everyone’s time, that I was paranoid, or worse, like I was creating something out of nothing in some pathetic bid for attention.

Two days later, my son had bush kinder, when we arrived, I realised that I had forgotten his lunch. I couldn’t leave him there without lunch, and my resolve to get to the bottom of my son’s symptoms had returned, so I decided to take the little man in to get a sample tested. While I was determined to make sure they tested a sample, I was also preparing myself to be made feel like a fool again. I steeled myself and went to the Nurses section of the clinic.

An older nurse with a beautiful, crinkly and reassuring smile took the sample away, she returned within minutes looking grave. She advised “There is a LOT of sugar in his urine, I’ve bumped you ahead to go in and see the Doctor right now”. She then did a finger prick test, but I didn’t see the result. We were then sent in to the same patronising Doctor who had given me the sample jar. (Oh wonderful) I felt instantly deflated and was sure that he wouldn’t take us seriously.

But take he did (finally) take us seriously. He told me that he’d called ahead to the hospital and I had to go to the Emergency Department straight away…

In the ED, my son played happily with his little sister while I went to the desk to explain who I was. Suddenly, there were a group of people around us ushering us in. I was surprised and confused by the sudden rush, but male nurse put his hand on my arm and said “You have a VERY sick little boy on your hands”. But wait, 20 minutes ago I was just being paranoid and wasting everyone’s time…?

We were put in a curtained off little section of the room and the poor little guy had two IVs put in - one in the arm, one in the opposite hand. It was traumatic, my son takes after me and it was hard to find the vein, even more so because he was so dehydrated. He wailed so much it made me feel ill and even the Doctor was shaking when she finished. For months and months afterward, my daughter would say “Sore arm, sore arm” every time we passed the hospital. Once the IV’s were in and they had taken blood to run their gamut of tests, I was left with him while they moved on to other patients in the ED.

Soon after, he was sitting up in bed, I was holding his hand and we were just chatting while I reassured him, my daughter on my lap, he looked at me and said, “Mummy, I don’t feel right...” then he turned grey, under his eyes turned black and he dropped on the bed, unconscious. I shook him, but he didn’t wake up, I was certain he had died.

I’ll never forget that feeling. I still struggle to talk about it without feeling sick and choking up.

No one had told me where the Emergency button was so I screamed out for help, three nurses came running. I have no idea what they did but he came to, bewildered and dazed. Conscious but not really lucid. I tried to get my legs (which had turned to jelly) to work so I could get close to him again. I was keeping calm for his sake but inside I was screaming. I remember my heart racing and experiencing wave after wave of nausea. I had to remind myself to breathe.

While nurses were attending to my little boy. I rang my Mother to come and get my daughter - and of course like most of us do in a crisis, the second I heard Mum’s voice I started to cry. I honestly have no recollection of my Mother arriving and collecting my daughter. In my memory she was on my hip, then she was gone. All my attention was on my son, I was so frightened, so confused by it all. Soon after that, or maybe during that time, my husband arrived and like he magically does, he got our son to laugh again.

in daddy’s arms, smiling again..

The Doctor who had put in my son’s IV was back and reassuring us. I can’t remember when we were told officially that it was Type One. I think that may be because I already knew. We were in ED for several hours; I can’t tell you how long. I wasn’t watching the time; it was somehow a combination of an eternity and an instant. We stayed in hospital for several days in ICU and learned how our life, this precious little life would never be the same again. But we still had him, and we came so close, so very close to losing our wonderful, beautiful little boy.

Once we had our diagnosis, an official diagnosis, we were treated with care. Our concerns were validated. When I described all his symptoms, we were reassured they were “textbook Type One Diabetes symptoms…”

Textbook... So, all those times that I had been to various Doctors, not just one, but numerous Doctors who treated me like I was being neurotic and paranoid when the symptoms I had described were “TEXTBOOK”. This, to this day –

5 years later makes me SO angry. My son could have gone into a coma, had a stroke, or worse, his life could have been cut short, we could have lost him forever, because no one bothered to perform a simple and INEXPENSIVE test to rule out Type One Diabetes.

When I think about how stupid I was made to feel, like I was wasting everyone’s time, I wonder how quickly things could have turned the other way. If I’d stopped returning to the clinic again and again. If I hadn’t forgotten my son’s lunch that day, and we hadn’t taken the sample into the clinic. If he had passed out at Bush Kinder, there is no way an ambulance could have found him and brought him to the hospital in time.

If I hadn’t been “One of those Mothers” who just wouldn’t give up - because a parent knows when something is not right. Then my little boy, my amazing, clever, funny little boy would be gone. All because none of the medical professionals I entrusted with my son’s care bothered to run a simple little test.

Today, back to his smiley self..

“On World Diabetes Day this year The Type1 Foundation has launched a huge awareness campaign to prevent misdiagnosis. Recently we surveyed over 300 families and 43% of parents reported their child was misdiagnosed. with 75% ending up in DKA as a result. The DONT IGNORE THE 4 campaign is saving lives and we won’t stop until every GP performs a finger prick blood glucose test at every consultation. Making misdiagnosis a thing of the past- Ange Liston-McCaughley - CEO T1F”