When Type 1 Diabetes strikes and your child is scared of needles!
- Cee
- Jul 27, 2022
- 9 min read
Type 1 diabetes often comes out of nowhere and knocks the diagnosed and their family over. Here is some insight to our first few weeks with T1D, from symptoms and diagnosis through to our week in hospital.
Lockdown! Home-school hell, juggling working from home in-between the cracks. As a period of time it all merges into one. However there are key memories that stick out...including that homemade papermache disaster, the epic water fight, the one "marie kondo'd' cupboard and the time when I tried to cut my son's hair.
It started so well with the clippers and then I just had to keep levelling it! I mean before I resorted to the clippers, he was resembling an over grown 'Happy Monday', it was absolutely necessary. Anyway before long, there he stood with a grade 1 buzz cut and a rather accusing pile of hair all over the floor. I was mortified...what had I done to my 9 year old boy! I think he even uttered the words..."what have you done to me Mum?"
Horrified I ushered him up to the bathroom, so we could shower off the hair from his back. As he stood there laughing at the sensation of his hands rubbing through his now spiky topping, I was struck with his appearance. Yes the hair, or lack of it was confronting, but I looked at his body and was taken with how skinny he looked. His now fully exposed face was gaunt and hallow and his body looked all bones.
Later that evening I mentioned it to my other half, and we reasoned he must be going through a 'Growth Spurt'.
Now when we think back to the weeks before the diagnosis, all the symptoms were obvious, but in the same breath they could all be credibly explained. There are many symptoms to look out for - check out this helpful link for more details...
SYMPTOMS
For us the ones that stood out and our excuses:
1) Drinking a lot of water - from a young age, our son seemed to have an aversion to drinking water. He'd leave for school with a full water bottle and it would return in exactly the same state. Pre-diagnosis his drinking habits really changed, he was guzzling water to the point my husband and I thought, "Finally! he understands the importance of water!'. It was also summer, so we thought the weather was making him thirsty and the considered growth spurt as well...all of these excuses sat comfortably.
2) Weight loss - as mentioned, our boy seemed to be loosing weight. This was really hard to detect as he has always been a 'slim jim'. He is an electric eel most days due to the SPD and ADHD, so his constant movement means he burns a lot of energy. The growth spurt also explains why some of the more padded bits, were stretched. It wasn't enough for us to identify that something was immediately wrong.
3) Temperament - we get volcanos all the time as already blogged about, but there was always a swing pendulum of kind, caring and funny behaviour on the other side of those moments. These disappeared. We had a very surly pre-teen, who was grumpy, despondent and easily irritated. We explained it away as hormones and also we were in the middle of lockdown, so the uncertainty of that was also a credible reason in our mind.
4) Wee accidents - our boy has always been one to leave it last minute, so occasional accidents weren't unusual. He did start having night accidents again, which was strange, but paired with the new hydration regime and hormone changes we put it down to that.
5) Sugar cravings - not often given as a symptom as lets face it, sugar is super addictive and we all have cravings. But we noticed an increase in his persistence in request for sweet treats, even sneaking treats out of the cupboard.
The symptoms can be subtle and easily explained, but trust your instinct and if you are worried at all contact your GP.
DIAGNOSIS
Not to sound too dramatic, but on the day we received the life changing news that our son had Type 1 Diabetes, I woke up and started crying before we had even seen the doctor - I was so positive he had T1D.
The evening before I went out for a paddle with a good friend who was telling me about a mutual contact whose son had just been diagnosed with T1D and his symptoms. I explained many of them matched what our son had and she gently recommended we get him checked out. This set off a spiral of over thinking and of course Dr Google.
When I sent the email the following morning requesting an urgent appointment, the Doctor called me and said that it was probably a UTI or hormones but to get a urine sample to them today for analysis. Worried that there was no urgency in getting a sample to them, I was left feeling so anxious, but within an hour the Doctor called back and said why don't I bring my son in with the sample and they'll have a quick look at him. I felt so relieved...we would have some answers.
I remember us both venturing cautiously in to the surgery (September 2020 - mid Covid) masks adorned and clutching the little tube of pee.
We walked into the small room and a familiar senior Doctor was sat on the patient bed, whilst a trainee Doctor conducted the appointment. Right up to the point the dipstick went into the urine, I felt like I was being spoken to like a bit of neurotic mother. But then things happened very quickly...within seconds the two doctor's shared numbers, completed a finger prick and the senior Doctor looked at me and said "Well done Mum, your instincts were correct!" I let out some sort of primal noise behind my mask and immediately tears prickled my eyes. My son was trying to escape into a game he was playing on his phone, but his head picked up and asked what was going on. I tried to explain away the noise I'd made as the fact I had just bashed my foot really badly.
Expedited urgency....
The Doctor's told us that we were to go straight to A&E, even giving us a letter which explained we were not to be held up by triage, but to be seen by the paediatric medical team urgently. When they explained that they were concerned that he could be in DKA, and what that means it was like they were speaking another language. Adrenalin was keeping me upright but it was incredibly hard to follow the T1D language that was soon to infiltrate our world.
When at the hospital, we must have looked like a pair of deers in headlights in masks. The nurses and care team were amazing. The little dude was absolutely petrified of needles, so trying to get a cannula in was horrific, but they managed it. To keep him distracted I kept approving new games on his tablet, whilst texting a list of things we needed to my other half. The phone coverage at the hospital was awful so I hadn't been able to speak to anyone yet, which was probably a good thing as at this point I was confused, beyond worried and hanging on by a thread.
It was confirmed by his blood results that he was indeed a Type 1 Diabetic and he would be admitted for treatment and care. The team also confirmed that we caught it in time, and he had not gone into DKA - Diabetic Ketoacidosis which can have serious complications. Here is a helpful link to explain more about the symptoms and treatment of DKA...
At this point my resolve was wobbling. I was keeping it very positive in front of my son, making him laugh, hugging him and keeping this bonkers situation as normal as possible. All the information was swirling in my head, along with the words loudly repeating - "HOW? WHY? WHAT THE ACTUAL F*&K!"
Very timely a consultant appeared and asked me to join her in a consulting room. She was gentle and kind and explained that this has happened to our boy for no fault of our own. This condition was not caused by diet or lifestyle, but was an auto-immune trigger that was sitting dormant in our boy and would have activated at some point in his life. The 'Why?' still to this day rattles me as T1D is not a condition that runs through our families, but knowing that auto-immune conditions do, helps me shut down that spiral.
"Around 90 per cent of people with type 1 diabetes have no family history of the condition." JDRF
The consultant shared a lot of information and explained it was going to be an intense lifestyle adaption for the whole family and a lot for us all to learn. It wasn't a generic "It's all going to be fine!' chat, it was more a "It's going to be hard, but you've got this!' type of chat.
I cried, snotted and collapsed a bit internally in that consulting room...then took a deep breath and re-joined the little man, who was still slightly oblivious (or in self-protection mode) staring at his screen.
The next bit...
We were transferred upto the children's ward and was immediately met by a specialist Lead Diabetes Nurse - Nicola. She was wonderful and explained as much as we needed at this time.
How I describe this time is "Being hit by a train, then they try and teach you a degree in Maths, Biology and Chemistry"
Luckily as mentioned, Nicola took her time and was very calm. I explained the learning differences that our boy has and how it can take some time for information to process and she took that on board.
Over the next few days we met with more of the diabetes team - consultants, nurses and dietitian.
Things that worked in our favour :
Our boy started to feel better
An amazing diabetes care team
Missing school
Being bought magazines
There being no limit on screen time
Things that did not work in our favour:
Covid - meaning only one parent could be in the hospital and undergo all the training solo
Our boys very real fear of needles and prickers
Anxiety on both my side and my boys side
Specific learning challenges, with words and confusing numbers
The sharp truth
As already mentioned, needles were not acceptable in my sons world and so that first morning on the ward breakfast was discussed and carbohydrates were calculated - insulin units were readied and then 4 hours later we managed to get the injection done. It was the most harrowing time I can recall in my life. My 9 year old child screaming, flailing, and crying and asking how I could let them do this to them (the nurses/doctors with the needles). Even writing this I can feel tears heating up in my eyes. When we finally got those initial units injected and he could eat, his question was "I never want to do that again, can we go home now?" He thought it was just that once that he would need to inject...the reality of it being 4/5 times a day along with countless finger pricks had not settled in his mind yet.
So I came up with a way to motivate and build confidence with this new way of life...we invented the "Prize a Prick" bag. A bag full of super things, lego mini-figures, pokemon cards...and everytime he had a "Prick" he got a prize. Initially it was for every prick, then after the first two weeks it was just the injection, and then just the night-time jabs. Yes we threw
money and bribery at it, but I would do it the same way again for sure. It worked for him and it helped him find his courage for this painful condition. In this instance bribery all the way!
We have actually just re-introduced a 'Prize a Prick' for his Libre 2 sensor as he was building anxiety about this needle too. Luckily that one is just twice a month, so not as expensive as doing it every prick.
Telling your tribe
I felt completely overwhelmed. Some T1D parents take it in their stride, I was not one of them. I was overwhelmed by what we needed to do every day, calculate, weigh, dispense medication, remind, prescription management, inject, monitor through the course of 24 hours. Essentially we had to keep his levels in range and keep him alive.
When it came to phoning my nearest and dearest to explain what was happening, the outpouring of tears and fears from me was met by love, research and support. Those special people will never understand how important they were during this time, there are no words, but I will forever be grateful in my heart for my great people. If you are going through this diagnosis as a parent or a patient, share, cry and cuddle your loved ones...this is the kind of thing people "step-up' for.
Keep on, keeping on....
As a condition T1D is filled with challenges and not many rewards. I have mourned my son's "normal" health life and still 22 months on I have days of anger that he has this to deal with in his world. But we are also improving in confidence each day...we've had our first abroad holiday (the extra supply bag was something else! a separate post on that to come), sleepovers, school changes, self-injections, sensors, unexplained highs and lows. When I look at where we started to where we are now, I am so proud of us all - especially our boy. He is a legend, who has a lot on his plate and will grow up to be one hell of a resilient human.
If you are going through this and want to reach out, please use the comment box below. T1D parents go on such a journey. Sending big love to you all.
More T1D posts to come....
Comments