Type 1 Diabetes

Our Type 1 Diagnosis Story

A couple of weeks ago, I was sorting through the boy’s clothes to go to the Charity Shop and I came across a small Parka jacket. Looking at the tag and seeing that it was age 2-3, I wondered why I had kept it so long.

As I was folding it, I felt something in the pocket. I reached in and pulled out a small red Lightning McQueen car and just like that I was back in that hospital room hearing the words no parent ever wants to hear.

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I have often been asked how I knew that Fin had Type 1 Diabetes. If I’m honest, I think it was purely down to mother’s intuition over a couple of weeks.

I will be forever grateful that Fin never got ill. I just gradually noticed over a number of weeks that he was drinking more fluids and needing to go to the toilet more often. He was 2 years old and had just come out of nappies and so at first I put the frequent toilet visits down to the fact that it was a novelty and that he wanted to make sure he didn’t have any accidents.

However, it all came to a head in the week leading up to him being diagnosed. A couple of days before, all the electrics blew in our kitchen and we therefore had no cooking facilities. I said I would take the boys to McDonalds for tea whilst Andrew waited for the electrician and made sure that Fin went to the toilet before we left.

We got to McDonalds which is a mere 10 minute drive, ordered our food and he immediately stated that he needed the toilet again. I took him, then we ate our food and went across to Asda to pick up a few things which is next door to McDonalds. He needed the toilet again as soon as we got in the store, so again, I took him, finished the shopping and got in the car to go home.

As soon as we pulled out of the car park, he started panicking again that he needed the toilet to the point that he was shouting “Hurry up Mammy” all the way home. The seeds of doubt were now starting to form as this was not normal yet I thought maybe he had a water infection.

That night, he woke at 10pm panicking and shouting that he needed the toilet. When I took him to the toilet he stated he was thirsty and asked for a drink. He hated water and would only drink squash but I had a pint of water on my bedside table which I offered to him and he bolted it and then asked for more. It was at this point that I definitely knew something wasn’t right.

The next day, Andrew had the day off work and I took Cian to school and then went on to work. I couldn’t concentrate all day, going over and over things in my mind and at lunchtime I called Andrew and said that I was worried that he may have Type 1 Diabetes. He actually laughed as he said he had been full of energy, that they had been playing football and rugby together all day and that he was as “bright as a button!” I remember saying that I hoped I was wrong but that I was going to test him with urine dipsticks I had at home that evening.

He then sent me this picture of him looking his normal, wicked self.

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I left the office on that Friday with everyone saying “Have a good weekend!” and I knew that the chances of that were extremely slim.

I felt sick all the way home and then as soon as he said he needed a wee, I took the dipsticks, dipped one and the glucose indicator went to the darkest level possible. I remember feeling physically sick and wanting to wrap him in a blanket and run away.

I went downstairs and showed the dipstick to Andrew and he looked horrified and said we needed to ring the hospital straight away. They were quite dismissive and kept asking if the urine dipsticks were in date and was I sure I had followed the instructions. I got quite frustrated at this point and so they told me to bring him in. I packed an overnight bag as I already knew we wouldn’t be coming home that night.

By the time we got to the hospital, Fin was sleeping. We carried him into the Out of Hours Centre and we were called in straight away. We were met by a female doctor in her late 20’s who asked me a few questions and then asked to see the sticks I had used. She stared at these for a little while and then told me not to worry as she was sure it was an error and she would do a finger prick test to double check.

I vividly remember him lying on the hospital bed in his Parka jacket and fluffy hood, sleeping soundly and not even flinching when she did the finger prick test. I then remember her face changing from a smile to a look of great concern and when I asked her what the reading was she said “It just says HIGH, it’s too high to give a reading!”

She then told us that he had Type 1 Diabetes and that he would need to be admitted immediately. I remember sitting there holding his little hand and sobbing while Andrew, in total denial, kept saying that he had bought him a little bag of sweets as a treat at lunchtime and could those have caused him to have a false high reading and her looking at him pitifully and shaking her head.

I then remember carrying him up to the Children’s ward telling Andrew I was giving up my job, we would have to sell the caravan and downsize the house because I was never ever leaving him ever again.

We were shown into a side room on the ward where we seemed to wait for ages before we were seen. They took his blood sugars again and they were 26 mmol whereas normal range is 4 – 7 mmol. I remember them saying that they would have to check for ketones and despite me telling them that none had shown up on the dipstick they were adamant that they had to do full bloods to make sure. The whole process was awful as he screamed the place down and fought every one of them until eventually they got what they needed and left us alone in the side room again.

By this time, Fin was very distressed as it was nearly 11pm and he was exhausted. He found a Peppa Pig magazine and came to sit on my lap and asked me to read it. I felt like a zombie at this point and I didn’t recognise my own voice as I read the pages to him. He turned to look at me and said “Not like that Mammy, read it in your normal voice!” I will always remember that, as even at his age, he knew that there was something not right simply by the change in my voice.

They then came back and said that they were going to try and put a line into the back of his hand as if the bloods tested positive for ketones he would need to go on a drip. I was annoyed at this as there had been no indication of ketones and I felt that they were putting him through an unnecessary procedure. However, they insisted and made us hold him tightly whilst he thrashed and screamed blue murder. They eventually got a line in and then he thrashed again, the line pulled out and there was blood everywhere. I remember the nurse laughing and whilst I’m sure it was a nervous laugh, it was like a red rag to a bull and I said enough was enough. He was shattered, picking up on our anxieties, had no clue what was going on and had been crying for so long he could barely catch his breath.

I said that there was no way I was putting him through any more that night and that IF the blood tests showed ketones, THEN they could try and put a line in once he had managed a few hours sleep and had been given time to calm down.

It was midnight by now and we were shown to a bed in a ward of six bays. I got him undressed and settled, Andrew went home and I climbed into bed with him, stared at his innocent little face and cried myself to sleep.

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At some point during the night, Fin received his first insulin injection and a further finger prick test, both of which he slept through. The breakfast cart came around and I realised I had absolutely no idea what he could eat. I asked the nurses and they were very blasé about it and simply said he could have whatever he wanted. I decided to give him some toast pending a visit from the dietician which I was told would happen later that day. We had to wait a further 24 hours to see the Consultant Paediatrician and Diabetic Nurse as they were on leave. The dietician came and told us how to treat a low blood sugar and what items we would need to have with us at all times going forward.

At some point during the Saturday morning, my mood changed and I adopted a different attitude where I decided there was no point in crying. We couldn’t change things and so we had to move on and stay strong for Fin. When Andrew arrived, I went to the local Tesco to buy items for Fin’s “Hypo Box”, I texted all our family and friends to tell them what had happened and for a few hours at least, I started to feel as though I was taking control. He had lots of visitors and presents and as he wasn’t actually ill, it was easy to pretend that none of it was happening until it was time for the next injection.

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He hated the injections and would see the nurses coming towards him and completely freak out saying “Mammy No” and cuddling into me and those moments were heart-breaking.

The only good news we had during those few days was that the blood tests showed that there were no ketones, meaning he had never needed the line in his hand and so I was glad that I had put a stop to that.

The next few days were a bit of a blur if I’m honest. I had lots of supportive texts saying that I could get through this and “hoping we were home soon” and all I remember is thinking I don’t want to go home as then we are on our own with this and are solely responsible for keeping him alive which terrified me.

The Consultant Paediatrician came at some point on the Monday and was excellent. We were already familiar with her as she had treated Cian on several occasions. She explained the condition really well, drawing diagrams to show how the body attacks the pancreas and as much as I tried to take it all in, I just felt I was unable to retain the  information and coupled with 3 nights of no sleep, I was really starting to struggle.

In the preceding few days, we had been told by countless people that once we met the DSN (Diabetic Specialist Nurse), we would feel much better as she was an expert and would explain everything perfectly.

I don’t know what I expected, maybe a Fairy Godmother to float in with a magic wand and make everything better, but nothing could have been further from the truth. She was pleasant enough but I didn’t find her very compassionate and she brushed over a lot of the information, not explaining it very well at all.

We were given insulin pens, vials of insulin, needles, ketone testing strips, a blood glucose testing machine, blood testing strips, lancets, a blood testing finger pricker, a sharps bin, control solution, glucogel and a glucagon injection for extreme hypoglycemic events. We were given lots of paperwork to give to the GP and a registration form to register all of the appliances with the supplier. It was total information overload and my head was absolutely spinning.

To top it all off, as I hadn’t been able to bring myself to inject Fin at this point,  she then gave me an insulin injection and an orange to practice on. Sticking a needle into an orange is hardly the same as sticking a needle into your child’s tiny little arm but I just did as I was told and sat there repeatedly injecting an orange with insulin, feeling like I was losing my mind!

Two things stood out that she said to me that day. Bearing in mind it was a mere 3 days since we had received the news that Fin would be insulin dependant for the rest of his life, I desperately asked her “Do you think they will find a cure soon?” and she responded with “Yes, I think they will but I hope it’s not in the next 15 years as I love my job!” Looking back, it was an unbelievably insensitive thing for her to say but in the moment I just clung to the part where she said they WOULD find a cure.

Then later, when the time finally came for me to have to inject Fin, she could see that I was really struggling and said “I know it’s hard but you have to realise that if you don’t inject him, he won’t survive!” Now I’m all for tough love when warranted but in the circumstances, I felt that a little bit more compassion would have gone a long way. I would have loved to have screamed at her that actually, she had no idea whatsoever what it was like to have to do something so abhorrent but, of course, I didn’t and with tears in my eyes, I injected insulin into my baby boy for what would be the first of many times.

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As I mentioned in my first post, things got harder before they got easier but eventually we got into a routine, Fin started school and we learnt to make the condition fit in with our lives rather than let it prevent us from doing things.

That said, it is a life changing, life threatening condition which can sometimes catch you out when you least expect it.

I am always mindful to remind people of the 4 main symptoms of Type 1:

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It is so important to know the symptoms, especially in young children who can’t express how they feel as easily as an older child.

I was told by the consultant that I had “saved his life” by acting so swiftly and knowing the signs and at the time, I felt that statement was a little over the top.

However, since Fin’s diagnosis, I’ve heard of so many children who were desperately ill but mis-diagnosed by GPs. Most of these children ended up in Intensive Care and some even lost their lives as their blood sugar levels had become so dangerously high that they had gone into severe DKA.
Diabetic Keto-acidosis (DKA) is a serious complication of diabetes which occurs when your body produces high levels of blood acids called ketones. This happens when your body can’t produce enough insulin as insulin plays a key role in helping sugar ( a major source of energy for your muscles and other tissues) enter your cells. Without insulin, your body starts to break down fat as fuel instead which produces a build up of acids in the bloodstream, called ketones, which can lead to DKA.
The symptoms develop quickly, sometimes over 24 hours, and if not treated can lead to loss of consciousness, swelling in the brain and ultimately death.

No one in this day and age should die from undiagnosed Type 1 Diabetes yet sadly, they  do because of lack of awareness. The condition is easily diagnosed with a simple finger prick test at a GP surgery which costs less than a £1!

If someone you love displays any of these symptoms, please seek medical advice and insist that they test for Type 1 Diabetes.

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If you’ve gotten this far, thank you for reading our story!

Beth xx

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