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The meter read ‘HI’– the words Hamish’s Blood Glucose Monitor uses to tell us that his levels are so bad, it can no longer display how high they are. Not a good thing to see. What had happened?
It was pretty simple. Hamish had come home from school and gone to his Nan’s for a visit. He decided he wanted a milkshake and when Nan asked him about testing himself and whether he needed to have a needle he said “No, I’m fine, I feel good.”
A few more bits of afternoon tea, no testing, no needle and ‘HI’ is the result. This was the second time in as many days Hamish had been with someone else, refused a BGL test and needle and eaten. He has been getting fed up with the restrictive and intrusive nature of Type 1 Diabetes and decided to just pretend it’s not there.
Only problem is that this has life-threatening consequences. Persistent and consistent high BGL readings can lead to ketoacidosis which is a dangerous build-up of chemical substances in the blood. And there are also longer term impacts such as eye disease, nerve damage, kidney disease and heart disease. But how do you explain this to a 9-year-old who just wants to be like everyone else that he can’t let this happen?
Our first reaction was to be mad – but mad out of desperate love and the need to protect your child from any harm. How could he risk his health like that? But once that initial exasperation past, we felt as though we couldn’t really blame him for wanting to escape the rigour of Type 1 Diabetes. But it didn’t make it OK.
We decided to wait to talk to him, not discuss it in the heat of the moment and ensure that when we did explain how serious his actions were that it was done in a way that didn’t make him want to rebel even more. We’re not sure we succeeded or that it sunk in – and we are pretty sure it’s not the last time it will happen. From talking to other parents with Type 1 Diabetic kids things like this can become an even more frequent occurrence in the teen years where hormones and rebellion really settle in!
As for Hamish, we did have to remind him that we trust him to watch out for his health by letting him go off with friends and family without our supervision. If he couldn’t show that he took the responsibilities of Type 1 Diabetes seriously then we would need to change our approach and reign him right in. And we’ve had a stark reminder that we need to stress to any adult that he is going with that he can never not test himself or inject to accommodate for the food he is going to eat.
We have made a bit of progress with Hamish in our last endocrinologist appointment where he has agreed to trial a Continuous Glucose Monitor, which will hopefully help to make the process a bit easier and less disruptive when it comes to understanding his levels. It gets fitted tomorrow so we will keep you posted!
Until next time, yours in a constant battle against Diabetes
Jen, Brad and Hamish
Since Hamish was diagnosed with Type 1 Diabetes at the age of 4 years we have struggled with how much we should tell him about the gravity of his disease..a life-long, life-threatening illness that will require constant attention and action. We had always let him know that we, as his parents, needed to ensure he was getting the right balance for his diabetes so that he stayed healthy but hadn’t really gone into any details on the consequences of things such hypos and hypers. Discussing potential comas, hospitalisation or other side effects like kidney failure with an 8 year old little boy just didn’t seem right.
Is that true?
The decision was taken out of our hands last year when Hamish had to prepare a speech for school. It could be on any topic and for whatever reason he chose Type 1 Diabetes. As you do, he went to Google and found a page on What is Type 1 Diabetes? He mindlessly copied the details on to his palm cards then asked us if he could practice reading his speech on us. The first few cards were pretty innocuous – they gave an overview on what Type 1 Diabetes is and how it was something Hamish was born with. Then he came to what we refer to as ‘The’ palm card. He started reading… “People with Type 1 Diabetes need insulin to survive.”
He stopped reading and looked up at us and then back down at ‘the’ palm card. “Is that true?” he asked. “Yes” was all we could manage. “Oh” he said. “OK”. And continued on with his speech. But the penny had dropped and he had gone from a blissful unawareness to an understanding that this wasn’t to be taken lightly – his life was possibly in danger all because of this disease.
Shielding from the realities of the world
As a parent, you would do anything to shield your child for as long as possible from the harsh realities of this world. Let them live in a simple environment where nothing much troubles them except whether they have the rarest Pokémon card or the latest skateboard. But unfortunately when you live with such an all-consuming disease it’s almost impossible to shield them forever. Sooner or later – whether it’s from a bad experience, overhearing someone talking or writing a Yr 3 speech, they will understand that their life is a little bit harder to manage than your average child.
For Hamish this realisation was the final straw in a year where he had lost his Uncle Peter – who was with us every day – to cancer within months of him losing his pet cat to the same disease. Death became a tangible thing for him at 8 years old and he began to suffer from anxiety and nervousness. We have since worked through this and while it hasn’t gone away (it tends to rear its ugly head when he is under pressure or in competitive situations) he is much more settled and we can see the triggers well in advance that bring his stress levels into an difficult place. We think of it as just another ‘side effect’ of Type 1 Diabetes and make sure that we factor it in as part of his overall health management plan.
Everything will be OK
But back to how much we talk about the seriousness of Type 1 Diabetes now that he has some understanding of the possible implications. Well we definitely don’t focus on it – what’s the point? We still impress on him the importance of checking his levels or understanding his food intake, especially if he is at a friend house. Or making sure that he has a way of contacting us if he doesn’t feel right, for example when he is out riding his bike. And if he asks a question, we try to answer it in a way that gives him knowledge but not fear. We know we don’t always have the right answers and sometimes we don’t have the strength to tell him what could really happen so we just say everything will be alright. Even as an adult we have to admit that this is what we tell ourselves because sometimes the reality is too much for us as well.
Yours in an everything will be ok mood
Jen, Brad and Hamish
We had a package arrive last week and Lyla, our middle daughter, wanted to know what it was for. Fletcher – the youngest, 2 years old – is in a research trial to find out what triggers Type 1 Diabetes. He has been in it since he was in the womb and will continue to be in it for the next few years. The package was the latest round of sample jars, collection swabs and surveys that we need to submit to the trial.
As we were explaining this we got to talking about how one day we hope that trials like this lead to a cure for Type 1 Diabetes. We started discussing the other areas doctors are working on such as smart insulin, where instead of repeated blood tests and injections throughout the day a single dose of insulin would keep circulating in the body and turn on when needed.
Hamish, who very rarely mentions anything to do with his Diabetes became very focused on this and whether he could have it now and stop the multiple needles and blood tests he has each day. We explained that it is still in research but perhaps he could consider using a CGM or the pump? But it was one of those days and one of those conversations where nothing was going to solve for what Hamish really wanted – which was to not have Type 1 Diabetes. He sat there silently and then big fat tears started to roll down his face. “I’m ok” he said “Nothing’s wrong”. But we could clearly see the pain he was feeling inside and the weight of what Type 1 Diabetes is to his life now and as he looked forward.
It just didn’t seem fair that at 9 years old, he has to deal with this burden. As a parent, you want to take all of that hurt and worry away from your child but we can’t. So we just hugged him. After a while – and a little bit of food – he was back to his regular happy self and the whole thing just went away. We talked again, told him we thought he was the bravest and strongest boy on the planet (just like a superhero) but even those who are brave and strong need to cry. He nodded and then went back to whatever he was doing before we interrupted him.
That’s the thing with kids, they are amazingly resilient, especially when they are dealing with a life-long and life threatening disease. It’s often us as their parents that ponder, turn over and hold on to those moments where it all goes to pot. We won’t forget those tears even though Hamish has long moved on. They remind us that he has big battles to face and to appreciate that he faces them so regularly with strength and determination. We live each day with a real-life superhero.
Yours in Capes (well, Hamish at least!)
Jen, Brad and Hamish
One night last week, we did the usual 11pm BGL test to check that Hamish’s levels were OK. 10.2 was the reading. Slightly on the high side and according to our insulin chart, we needed to give him half a unit of insulin. For some reason (who knows why, maybe parent’s intuition?) we decided not to give him any and thought that based on his levels, how he had been trending the last few nights and the type of day he had had we could happily let him sleep through the night, no 3am BGL test.
For some reason (who knows why, maybe parent’s intuition?) one of us – Brad – woke suddenly just before 3am and decided that given he was up, he may as well test Hamish. 2.7 was the reading. What?! How did that happen? We were thankfully able to wake Hamish, get him to drink some juice then eat some biscuits and within 30 mins he was back to a good level.
The next morning we sat talking about how he had dropped so low and what would have happened had Brad not woken up. With Hamish having zero awareness of hypos in the middle of the night we are his only line of defence. His long acting insulin would have continued to release and his BGL would have continued to drop. 2.7 is bad enough but any lower and he could have fallen unconscious. We could have lost him. It’s so frightening to think that a decision not to get up at 3am – and one that all sense and reason would have told us was a fine decision to make – could have been so devastating.
3am or CGM?
So how do we deal with this? Well we really only have two options – wake up every night or use technology. For us, we will continue to get up at 3am (or thereabouts) to ensure he is OK. Type 1 Diabetes is such a frustratingly unpredictable disease and we have had a stark reminder that we can never trust anything. Just because something happened the night before, doesn’t mean it will happen again. What seemed like a perfectly fine reading nearly turned into disaster.
Our other option is CGM – Continuous Glucose Monitoring. We have heard parents of kids who use a CGM say how it has saved their child’s life a number of times and now we know what they mean. Using a needle, an electrode is inserted under the skin (usually on the stomach) and is connected to a device that will continuously track blood glucose levels. If it starts trending down, a monitor will alarm, waking both the child and depending on the brand of CGM the parent to treat an impending hypo. A great system but at the moment, not within the reach of every family. It’s currently not subsidized by the Government and a standalone CGM can cost around $1,600 for a starter pack. Then there are the supplies on top of that which are also not covered and can run to over $5,000 a year. There has been a lot of publicity around this lately with the Liberal Government pledging to provide every child with one of these machines if they are re-elected. (read more about that here https://www.diabetesaustralia.com.au/news/15239?type=articles)
Set that alarm
We have a child who doesn’t want any device attached to his body. It’s not a massive device but it’s there and at the end of the day, it’s his decision. We think that Hamish goes through enough already dealing with his Type 1 Diabetes so as a parent, the least we can do is get up at 3am to check he is ok. And we will be getting up. You can start to get a bit complacent at times with Type 1 Diabetes and then something like what happened to us comes along and throws a bucket of ice water over you. We can’t be complacent and we can’t think something will never happen to us because it can and it almost did. We definitely hugged Hamish a little bit harder that next morning and thanked our lucky stars (and Brad’s intuition) that he made it through another night.
Yours with the alarm permanently set
Jen, Brad and Hamish
Last night we let Hamish stay up a bit so he could keep reading – he had just started Harry Potter and the Philosopher’s Stone on the weekend and couldn’t put it down. As it got a little bit too far past his bed time and we called ‘book down’ things went a bit pear shaped. A missing bookmark elicited a slight tone of panic, a “c’mon, hurry up” bought on tears and a stern “Hamish” a complete emotional outburst. Was he just tired or was it the Diabetes?
This is a question we have asked in varying formats over the last (almost) 5 years since Hamish was diagnosed. You can insert any number of scenarios – “Was it just normal 5yr/6yr/7yr/8yr/9yr old behavior or was it the Diabetes?”, “Is he being naughty or was it the Diabetes”, “Is he overexcited or was it the Diabetes”. You get the drift. In this instance, it was the Diabetes. Hamish was having a hypo. After a drink of milk and a biscuit all emotion had disappeared and he happily went to bed.
It’s not just the lows that make Hamish emotional. If he is too high he can also be angry and defiant. He takes on a cowboy stance and is ready to shoot anyone in his way! We notice that his pupils get really big and we are unable to reason with him on any level. Now, this is also what it is like to deal with a 9 year old and we have been caught out thinking it is the Diabetes and after a quick blood test find out he is all good! He is just being 9.
“You can’t act like that mate”
That said, it doesn’t take away from the emotional roller coaster of a diabetic life. Fluctuating blood glucose levels can make it really difficult for Hamish to control how he is feeling. For a child, that’s a fairly big burden to carry and we often tread a fine line between excusing some behavior because of Diabetes and teaching him that certain actions are just not acceptable.
We try to mix a little bit of compassion with a little bit of “you can’t act like that mate” – but that’s not to say we don’t lose it at him at times and then feel terribly guilty when we realise it was probably out of his control! Once the dust settles, we just try to go over what happened and help Hamish work out how he can tell when he is not himself due to his blood glucose levels and do something about it.
Consistent eating patterns definitely help. A long period between food is not good for Hamish and we are trying to teach him to read the signals of when his mood is being affected by lack of food. It’s a pretty amazing transformation, like Jekyll and Hyde pre and post that first bite of food.
On the whole, Hamish’s mood swings that are caused by Diabetes (vs the ones where he is just behaving badly!) are short lived and easily navigated out of. It does take patience – which being honest we sometimes don’t have – and a quick response with either food or insulin and we are out the other side. Not so bad in the scheme of things but it can take its toll.
The burden of Diabetes can bring on feelings of helplessness and frustration in both the Diabetic and those who care for them. For us, this can be compounded by a period of little sleep after getting up multiple times through the night or where we just can’t seem to get Hamish’s diabetes under control. In these times we need to come closer together (all three of us!) to ensure that we have a clear head to see our way to the other side. We do get through it, as do the thousands of families who also deal with this every day. Hat’s off to you all.
Yours in a “Is it the Diabetes?” permanent question
Jen, Brad and Hamish
As a foot note, ‘Diabetic Burnout’ – where the thought of managing Diabetes becomes very overwhelming – is a known outcome of living with Diabetes. Over a long period of time this can also lead to depression. If you are having any of these feelings there are people that can help – talk you family, friends, your doctor or endocrinologist . You can also contact organisations like www.beyondblue.com.au or www.blackdoginstitute.com.au
This was the number of needles we delivered to our local chemist today in our monthly ritual of ‘sharps disposal’. It probably was a similar amount last month and will probably be a similar amount next month. An average of around 8 needles a day, sometimes more, sometimes less, depending on the type of day we are having or the insulin we are using.
We don’t use a sharps bin for our needles – those ugly yellow safety tubs – we use a nice glass jar with a star on it, a gift from a friend the Christmas Hamish was diagnosed with Type 1 Diabetes. It somehow makes us feel better to see each needle drop into something stylish. Don’t ask us why, it just does! Then, each month, as the jar starts to overflow, we transfer those little needles into an empty milk container for transportation to the Chemist. Another month down and a nice empty clean jar ready for the next day to arrive.
Introducing the ‘iHamish’
You are probably asking “Why don’t you use an insulin pump?”. Well, for us as the ‘injectors’ and ‘disposers’ of needles, the insulin pump would seem like a pretty good option. Every ‘pumper’ we have ever spoken to believes it has changed their life – least of all because you only need to change one cannula every 2-3 days vs a regime of multiple injections each and every day. The benefits of control and flexibility seem awesome let alone the ability, when paired with a CGM system, to stop delivery of insulin when you are too low.
For Hamish, however, it’s a definite ‘no way’. The initial discussion of technology and associated apps was very appealing – we think he could see himself as a real life ‘iHamish’. But when the reality sunk in that he would have the pump permanently attached to his body, day and night, it soon took the shine off adding a new device to his technology portfolio. Even the fact that he could remove it for one two-hour period if he was say, surfing, didn’t change his mind. He just couldn’t come to terms with the fact that it would be ‘always there’.
Never say never
Adding to the “to pump or not to pump” debate was the fact that Hamish doesn’t care about the needles. He could have 18 needles a day and he wouldn’t blink. So we figure as long as he is OK, we are OK. After all, it is his body and it is ultimately his call.
That’s not to say one day in the future he won’t go on to the pump. We will keep discussing it, looking at ways it will help him and how he could fit it into his very active lifestyle. We would never say never and we know he wouldn’t either.
Until then, we will keep filling up that jar, one needle at a time.
Yours, injecting, not pumping, Jen, Brad and Hamish
Hamish ran the ‘Colour Run’ on Sunday and proved that even a hypo mid way wasn’t going to stop him enjoying the happiest 5kms on the planet!! #diabeteswontstopme
Hamish’s grandfather (or as he calls him, ‘Bampy’) has had Diabetes for almost 30 years. He was originally diagnosed as having Type 2 Diabetes but we more recently found out that it is actually LADA or Latent Autoimmune Diabetes of Adulthood – a form of Type 1 that occurs in adults, often with a slower onset and commonly mistaken for Type 2.
That aside, diabetes has taken a toll on his body. Around a year and a half ago Bampy suffered kidney failure, bought on by the effects of Diabetes. He now has to have dialysis three times a week, which means he goes to hospital to be attached to a machine for around 5 hours at a time. It pumps the blood from his bloodstream to a machine that filters waste and excess water and then back into his bloodstream. On top of that there are numerous operations to insert the tube that supports this machine. Unfortunately his veins often fail him so he has had countless operations to try and re-establish a connection. It’s awful and takes a toll on him physically and mentally.
Bampy’s kidney failure is referred to as a ‘diabetes related complication’. Over time high blood glucose levels (BGLs) can damage the body’s organs in a surprising and shocking amount of ways. For a Diabetic, the potential complications are:
But wait, there’s more
They are of course the ‘big ones’ but we also find with Hamish a lot of other little side effects. His digestion is not that great and he often gets blockages caused by his body drawing water out of his system to cope with high blood glucose levels. A stomach bug usually results in a hospital visit to re-hydrate and keep ketones at bay and a simple cold can hit him harder and take much longer to clear up. Not to mention the fact that when the body needs to fight a cold or deal with something like hayfever it stops worrying about processing insulin, even the synthetic kind. So, as a result, he tends to run way too high and no amount of extra injections makes a difference. He suffers migraines relating to hypos and hypers and then there are the cuts and grazes he gets as an avid skater, surfer, bush explorer, etc etc… a sore on the foot left untreated can easily ulcerate and cause a whole raft of other issues as we recently found out.
So on top of the day-to-day balancing act, we also have to consider the longer-term impacts of fluctuating BGLs. We do know that if we can actively manage Hamish’s diabetes and keep his blood glucose levels within the normal range, the risk of damage to his body is reduced. Sometimes easier said than done but it is definitely the goal!
Reducing the risk
A critical part of this active management is our endocrinologist, and we have recently found an awesome one. We have had two consults so far and can see straight away that she really understands what Hamish needs. She is tweaking and adjusting, recommending new things and being an integral part of his ongoing plan of attack. Our biggest learning here is that if you are not happy with your endo, don’t sit back like we did for a few years, go and find a new one. The consequences are too great to not get it right.
And get it right is what we will keep trying to do. Our best hope is to be focused and committed to that active management. Be always on, no matter how exhausting, frustrating or overwhelming it might be and hopefully set Hamish up for a lifetime of good control and minimal complications. His Bampy is cheering Hamish on and hoping that he will never have to go through what he does as a result of living with Diabetes.
Seems a good place to highlight that you can donate to various organizations who are all working to improve treatments and find a cure for Diabetes. Here are a couple we support:
Yours in (desperately trying!) active management,
Jen, Brad and Hamish
It’s Thursday and we’ve had Hamish’s best HbA1c result ever so we thought we’d celebrate with a #diabeteswontstopme video! Make sure you crank up the sound – Hamish loved the groovy cowboy track as he goes rainforest riding with Simba the Horse… #diabeteswontstopme