It’s almost the anniversary of when my son was diagnosed with Type 1 Diabetes at the age of 5 and this year it will have been 6 years. Before he was diagnosed I didn’t know what the signs and symptoms of Type 1 Diabetes were, and it almost ended badly for us. I don’t want that to happen to other families, so I thought it was time that I wrote this post and did my bit to try to help prevent it.
Knowing the signs and symptoms of Type 1 Diabetes in children could save your child’s life. That sounds dramatic doesn’t it? I’m not trying to scare anyone, but due to my lack of knowledge about Type 1, my son could have died.
Straight away at the beginning of this post I am going to give you a short list of the main signs and symptoms of Type 1 Diabetes, so that hopefully they will stay with you. Please note though, that even if your child or yourself have all or any of these symptoms it doesn’t immediately mean it is Type 1 Diabetes. In simple terms here are the signs and symptoms to watch out for:
- Increased thirst – this can really be insatiable, and lead to bad behaviour if they you say no to a drink, as the need is so strong.
- Frequent urination – this is not just due to them drinking more, this is their body trying to flush out the extra glucose that it can’t cope with, and the build up of ketones.
- Tiredness – they will be likely to be lacking in energy and finding simple things a real chore to manage.
- Weight loss – this can be extreme and can happen in a very short space of time.
These are the main signs and symptoms, and what Diabetes UK call the four T’s of Type 1, Toilet, Thirst, Tired, Thinner. Type 1 Diabetes isn’t always easy to spot, some Doctors have been known to miss it, but the more aware you are of the signs, the more likely you will spot it.
There are some other symptoms, such as blurred vision, episodes of thrush, slow healing of cuts and grazes, acetone smelling breath. The breath I would describe as smelling like nail varnish remover. The later stages of untreated Type 1 diabetes can involve vomiting, heavy deep breathing and becoming unconscious (coma).
Our Type 1 Diabetes Diagnosis.
A few weeks before he was diagnosed my son had some sort of virus/bug that meant he was vomiting, not himself and generally feeling rubbish as you do when you have a sickness bug. There was nothing unusual about this bug,just the usual childhood bug that had me washing sheets and following him around the house nervously with a bowl. He was no less or no more ill than he had been in the past, and he seemed to recover well.
After the bug disappeared I noticed that he was drinking a lot more than usual, but I put this down to the illness and the possibility of dehydration because of it. So, I let him drink plenty including fruit juice. Any Type 1 diabetes parents reading this now will probably be cringing with me at this bit, as fruit juice is very sugary and the worst possible thing for him to have been drinking whilst undiagnosed and as we found out later already with dangerously high blood glucose levels.
His behaviour had been getting steadily worse just before, during and after his sickness bug. I had no idea what to do with him, he was wild and uncontrollable. I was at my wit’s end trying to work out what parenting fail I’d committed to have such a badly behaved child.
One of our biggest arguments was over the fact that he was insisting on drinking so much before bed and then wetting the bed every night. I still feel awful about this now, as although I didn’t know what was going on, he must have been so desperate for that drink.
He would have wet the bed regardless of how much he had or hadn’t drunk, it’s another way that your body tries to get rid of excess glucose and a build-up of ketones.
I rang the Doctors on the Thursday and got him an appointment for the Monday because I noticed he had lost a lot of weight when he was ill. I wasn’t that worried as he’d been sick a lot so weight loss seemed natural, although it was a lot of weight. I mostly booked the appointment to set my mind at ease, as he just didn’t seem himself.
On the Friday he was mostly just lying around the house, he didn’t want to play, he just wanted to watch television. Anyone who has ever met my son knows that he doesn’t do sitting still, he rarely watches tv and if he does he’ll switch positions or seats at least a few times every few minutes, he’s a fidget bum and always has been.
On the Friday he wasn’t, he was lethargic and not himself. I didn’t worry though, as he was off to the doctors on Monday, only a few days away, and maybe he still had the bug hanging around in his system. He was diagnosed as having asthma the year before, but very rarely needed his inhalers.
That evening when I was putting him to bed on Friday 24th July 2009 he needed a lot of his inhaler, he sounded a bit chesty and was so worn out he was asleep before I finished the last puff. I was relieved, as with his ‘bad’ behaviour recently I was also worn out.
I was sat downstairs with my eldest sister Tracey chatting away, when we realised we could hear something about 2 hours after I’d gotten both boys to bed. On investigation we realised that it was Fin’s breathing that we could hear. We could hear him struggling to breathe through closed doors and from the opposite end of the house.
I tried his inhaler, but he looked a bit off colour and was so lethargic that I phoned the out of hours doctor. PLEASE if this ever happens to you ring an ambulance not the out of hours Dr, I didn’t know any better and didn’t realise how serious it was.
We went to the out of hours doctor who was about to prescribe Fin some steroids (steroids can raise blood glucose levels massively) and send us home after he’d had some oxygen, when I mentioned casually – I had no idea how important this was, that he had been really thirsty lately and had started having accidents despite being toilet trained for a long time.
One urine test later and I was told my son had Type 1 Diabetes. In his hospital records he was diagnosed on 25th July 2009 after a blood test, but we knew from this doctor on the 24th it was just very late at night. I nodded and accepted what the doctor was saying, without realising the implications and then she told us to drive to Treliske the bigger hospital, and that we could stop off at home to collect pyjamas first as they’d want to keep him in over night.
I will add here that this Doctor got in to trouble for this, as we should not have been told we had time for anything and we shouldn’t have been driving him ourselves, he should have been in an ambulance with oxygen and expert care. When we got to the main hospital, for the first time of many my little man had to have a cannula put into his hand. It shows how out of it he was, as he didn’t complain or hardly move.
When they tested his blood glucose, the meter said ‘HI’ which meant that it was too high to be recorded. The normal blood glucose range is between 4 and 8, and most meters will read up to at least 33. Basically his blood glucose levels were at a very dangerous level.
At this point they told me that due to untreated Type 1 Diabetes he had a thing called Ketoacidosis, and that if I had waited for his hospital appointment on the Monday it’s very unlikely that he would have survived.
They also said there was no guarantee that if I hadn’t come in that night that he would have made it to the next night even. This is when it hit me just how ill my son was.
The NHS website describes diabetic ketoacidosis like this..
This is a serious condition, where the body breaks down fat and muscle as an alternative source of energy. This leads to a build up of acids in your blood, which can cause vomiting, dehydration, unconsciousness, and even death.
I have never felt like such a bad parent as I did that night lying in a tiny hospital bed with my son on a drip, knowing that because I missed the signs he almost died. I have also never felt so alone, scared and upset.
It took over 24 hours for his blood glucose levels to regulate more, and once he had some insulin in his system he was full of beans. We were in hospital for 5 days, where he was doing somersaults off of beds into walls because we were still trying to get his insulin levels right and he’s still loopy when high these days.
Luckily he was mostly accepting of injections, and only had to be held down by myself and a nurse twice before he gave in to it, despite only having just turned 5. In all the years he’s been a Type 1 his acceptance and maturity over it has been amazing and made things a lot easier for me. I’m so proud of him for this.
Going home the reality hit me that this was for life, and it seemed strange that everything looked the same when life wasn’t going to be the same again, but my little man was back, he was smiling again and despite knowing he had a life threatening condition to cope with for life, I was so relieved that he was alive, so I knew we could cope with anything.
I am so emotional now after writing all of this down, but I felt I had to, and if even one person reads this and spots the signs early in their own child so that they don’t have to almost or actually lose that child, then that would mean the world to me.
A slightly teary Stevie x
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