Youth rider Kai Watts – training and racing with Type 1 diabetes

15 May 2014

Kai Watts is an Under 12 racing member of CC Hackney with Type 1 diabetes. His mum Karen tells us about how Kai, his parents, his club and its coaches all contribute as a team to managing the condition so that he can race as fully as anyone else.

You can also read more about how youth riders with diabetes can take part in cycle sport (and how coaches and technology can contribute to that) in our partner feature written by Willie Watt.

IMG_0695Our eldest son Kai was diagnosed when he was eight years old. He is eleven now. He cycles for CC Hackney on the track at Welwyn, Herne Hill and now at the newly opened Lee Valley Velodrome (the London 2012 Olympic track). He races and also does some distance every Sunday – usually 30 to 40 miles, but occasionally longer 60 to 80 mile rides. His dad accompanies him on long rides. He wears an insulin pump (vital for temp basals both during rides and the night after) and has full-time funded sensors (CGMS). His pump is held in a case around his waist. He has no “hypo awareness” – and he eats lots of jelly babies. His preparations include an adult having a glucagon injection to hand during rides, and lots of blood glucose checks. He has milk shakes post-exercise.

About Kai’s insulin pump

pump pic onePumps deliver background insulin (basal) continuously throughout the day. You can set different rates for different times and can set a whole sports profile for days when you’re active (so you can deliver less insulin during activity) then also reduce it around 01:00 a.m. when blood glucose drops following intensive exercise.

The pump also has a bolus function. This is where you count the carbs you are going to eat, take your blood glucose with a finger pricker, and then input the information into the pump. It calculates the amount of insulin Kai needs for the meal, and it can measure down to 0.25 units which is very accurate.

About Kai’s CGMS

The CGMS has a small needle which is just under the skin and it continuously monitors blood glucose – it does not directly tell the pump what to do (that is the artificial pancreas – the next breakthrough on the horizon) but it will suspend the pump (basal insulin) if Kai goes below 3 mmol. It also gives clear graphs of blood glucose activity and uses arrows to show if it is dropping or rising fast.

It all sounds very technical but over time it becomes second-nature, and my partner Prosper and I are in the process of training and coaching Kai in use of the pump. Kai’s knowledge of carbs is brilliant.

First diagnosis

image1Kai was diagnosed on 6th June 2011, and he was already cycling and swimming. That particular weekend he was cycling. As parents it is petrifying because exercise is one thing that can play havoc.

We quickly realised that working with injections was really tricky – and Kai was on such small doses that preventing “hypos” was almost impossible. Kai was immediately put on the waiting list for a pump which he started in January 2012. His dad Prosper then started to accompany Kai to all cycling sessions and subsequently he came a volunteer for CC Hackney. He’s currently doing his British Cycling Level 2 coaching award.

I think if Kai hadn’t already been an active cyclist when he was diagnosed as a diabetic we honestly probably wouldn’t have encouraged him to ride. Seeing the banking of a velodrome still terrifies me, although Kai himself has no fear! And because cycling involves long rides in the middle of nowhere, he would probably have gone down the swimming or running routes instead of cycling. But sport and exercise have always been part of him. Swimming and athletics are also his joys though, and triathlon is probably his next step.

How we reacted to hypos

IMG_0554Hypos are our trickiest challenge. Kai has no hypo awareness – he can be running, cycling or swimming and the only way lows are recognised is sometimes by looking at him. He can get dangerously low in the mid-1’s before he says he is low. At first we did the standard glucose tabs but now jelly babies are his friend. For cycling he has one bottle containing diluted apple juice which he sips, and one with water, with jelly babies in his back pocket. Post-exercise he always has a milk shake drink.

Managing club sessions

image2Prosper is always with Kai at club sessions anyway, but all the coaches know Kai’s signs and on long rides the group has waited until he comes up. Touch wood Kai has never fitted – but the management this takes involves sensors plus up to 15 blood glucose tests per day. Prosper always has glucagon with him (the orange injection) because, although this is held in ambulances, they could be in the middle of nowhere. It’s never been used but it needs to be available at all times.

Becoming coaches is the best way. Kai is so active and we are so determined for him to be able to continue with the level of activity that he wants to do. We do anything to allow that to happen.

The main support that riders need if already diagnosed is simply awareness. A simple add-on to coaches’ First Aid courses covering hypos, hypers and safeguards would be great. Type 1 is such a hidden condition that it can be overlooked.

How things are going

IMG_0613Six months after starting on the pump, with the continual lows, we put in an application to the CCG for sensors. These are not cheap and are not provided as standard. Kai is lucky as he received full funding for sensors which is rare – and even rarer not only on hypo awareness grounds but also levels of physical activity. Technology is the way forward. I doubt there will be a cure in Kai’s lifetime but the pump, blood glucose monitors and sensors have all dramatically improved in the last five years and they are continually improving. Kai’s HBA1C over last year has ranged between 6.5 and 7.2.

Kai remains healthy but weight is a problem – i.e. keeping weight on. Balancing Type 1 and exercise is difficult, and we are continually working on getting more carbs into him. Without technology Kai would be at risk.

Fixed insulin and MDI injections are very difficult to manipulate – and, of course, at 11 years old Kai is growing rapidly so constant adjustments to insulin are needed. The pump and low suspend is our safety net.

You can also read more about how youth riders with diabetes can take part in cycle sport (and how coaches and technology can contribute to that) in the partner feature written by Willie Watt.

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2 responses to:

Youth rider Kai Watts – training and racing with Type 1 diabetes

  1. John Wheeler
    June 2, 2014

    Very interesting reading about Kai. In his most recent cycle race at Lee Valley Closed Circuit U12 on May 26th, I noticed Kai early on with the front group that broke away early. Also in there trying not to let stress of a poor start send his blood sugar up too much was our son Leon Wheeler, also type 1 since summer 2012 when he was 10.

    We approach Leon’s training and racing very differently. Firstly I have a rare Type2 genetic form of Diabetes, onset age 44 – and have others ion my close family with same condition – in a worse form requiring injecting insulin – so we had plenty of family experience, and I have done a lot of endurance sport (swim/cycle/run/Triathlons) before and also since – and got it wrong sometimes eg. forgetting to eat enough before an afternoon race!

    Leon was racing and winning at Triathlons/Aquathlons up to 2 weeks before a severe sudden decline with Type 1 symptoms, and returned after a brief stay in hospital to a race 2 weeks after – and has trained and raced since with a fair bit of success at Cyclo-Cross, closed cycle circuit racing, cross country and Track running, swimming and multi-sport/Triathlons. He trains for all three Triathlon disciplines and is in a Swimming Club, Traithlon Club, and Athletics Club. The only long sessions he does are 2 swim ones – both very early mornings- and he has had the occasional hypo – he stops, tells the coach, gets out of the pool, tests himself – and takes appropriate snack – usually dextrose tablet or 2, and also carton of pure natural juice (concentrate ones are higher sugar content – he gets back in water usually about 5-10 minutes later. The coaches are all aware, as in the other disciplines, but from the start Leon has luckily been very aware of when he is low – but less so high (but we can tell as parents!

    For training – before diagnosis Leon was coached, or rather guided, by both parents and our mantra was “less is more” – he is a growing child, and although very good – there is plenty of time – focus on long-term. This is still our view – even more so having to manage his Type 1 condition with him. Leon’s longest Bike ride is c. 10-15 miles, run about 2-3 miles (max once a week or less). He does a couple of other faster, more intense workouts for Bike and Run, and his main aerobic base since aged 9 (before Diabetes) has been walking/cycling to school, This was fun at Primary School as it was 2 miles or 3 mainly downhill there, and uphill back! I went with him then for both Bike/Walk, the walk was more walk/run mix across fields and woods – with a footwear change needed when muddy! Nowadays he goes alone on a more boring, flat, road only 2 mile route to secondary school – but can choose a more circular and very hilly 3-4 mile route if he has time!

    I am a level 3 endurance Athletics Coach and main activity for 6 years has been coaching young children in multi-event approach/introduction to Athletics – but for many more years my background has been as a Performance Coach. My partner, Loretta, has been an elite international Athlete and Triathlete – also has a Masters Degree in Applied Sports Science and been a swimming coach to children – we are very familiar with specific endurance training, and this has helped a lot – but the Psychological issues of Leon being, basically pretty fed-up at times with it all (the Diabetes complications) has been quite wearing. Several times I have both not taken him to races – and on a couple of cases when clearly his Blood Sugar was too high – and he is losing focus, or, he looks vacant and out of it and a race is going badly – I have told him to stop (I have been worried, probably unnecessarily so mostly, for his health and safety – and safety of others in a Bike race situation). Leon is very competitive – and an onlooker close by on these few occasions will have an enraged, and frustrated child – it all makes it just a little more unpredictable/interesting – however this was mainly uin Year 1 post Diabetes onset, this year he has done a lot better and coped more sensibly with it all when things are not ideal – such as feeling rubbish in race/training, or becoming aware of high blood sugar levels just before racing.

    Unlike with Kai – we very early on decided, and persuaded Leon, not to go down the more invasive route of an insulin pump. Our view was that this, and other body attached devices would not go so well with swimming seriously a lot, or with wearing a tight neoprene Wetsuit/Tri suit – and also as a family we are basically hands-on, low tech, and seek to minimise technology – often at odds with most around us. We have very few gadgets and I suppose don’t want top go down that route. We have learnt to test blood sugar levels very frequently, especially in the last 3 hours right up to race starts – this way we can try and adapt to rising or falling blood sugar levels.

    Lastly – in this long comment! – food/eating! We always eat very well, grow our own fruit and veg in summer, almost obsessive organic home cooking types – but we also make, eat, love cakes and chocolate! So does Leon ! Going to Cyclo-Cross and other cycle races is just as good for the cakes after – so we all do have a few – and usually go for a long walk afterwards. We have seen a lot of Suffolk/Norfolk countryside after the Eastern CycloCross league races for the last 2 winters.

    We try to ensure and encourage Leon to eat a good balanced diet, and apart from watching the sugar content/seeking to reduce this – he eats most stuff. We have recently cut back on white bread/white pastas having more wholemeal – but unfortunately the food choices at Leon’s secondary school are not great for healthy eating really – and we recently discovered his higher than usual post school Blood sugar readings were no doubt partly caused by the chocolate brownie or two during day – my worries about a hypo on way home on foot or bike have almost never even got close.

    Leon has not had any problems keeping on weight post diagnosis – he was frail, thin and underweight with a blood sugar level of 41 after being ill for nearly too weeks when we found out – but he recovered all the muscle mass, weight and looked almost fine with in a few weeks. There are plenty of leaner kids then him getting ready to swim at his Club Squad – but he is not in any way obese or even mildly too weighty either!

    So, hopefully Kai and Leon can exchange a few ideas/experiences next time they line up before/after a cycle race – they have something in common most of the others don’t have – which can be useful – at least they should know what their blood-sugar level is!

  2. Simon Peters
    November 30, 2014

    Hi Karen and Kai,
    Stick with it, your all doing amazingly. Alfie is doing great on the British Cycling Olympic Development Apprentice programme and never see’s himself as different or disadvantaged to any of the other riders. He just knows he must prepare and manage each session differently and carefully. I cant say he gets it right everytime as he Hypo’d mid session yesterday after a 500 metre effort, which gave him a poor time. He still eats lots of Carbs and fruit during his days and administers the correct insulin through his pump. Of course he still has problems and disadvantages but has realised he just needs to ‘Nibble’ all day and…..Test, Test, test (difficult on a long 3 hour ride) but just nibbles….All the best, catch up next season. Simon and Alfie

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