If you haven’t already, do read Part 1 of Mother Sider Claire’s post from Thursday night before reading tonight’s post. If you’ve read it already, prepare for further feelings of admiration and respect as she brings us up to present day and shares daily routines and insights into Charlie’s condition.
We are proud to share these two posts with you during Diabetes Week – please do get involved by sharing online to help spread awareness. Thank you, Claire, Chris, Grace and, of course, Charlie, for allowing us to share your story.
Back to Claire…
‘Unexplained changes in Charlie’s numbers are hard to deal with. A hypo (low blood sugar) when you are least expecting it can make everything stop. We aim to keep Charlie’s blood sugar (or BM) over 4 m/mol (molar concentration) and under 7 m/mol. The risks associated with a low blood sugar are immediate: seizures, coma, organ failure. Very low blood sugars are dangerous. Charlie recently had a reading of 1.7, that’s the lowest he’s ever been. And what really threw us was that we had tested AND TREATED a moderate hypo just 15 minutes before. All we could do was stay calm and deal with it. Charlie was fine, a wry smile on his face as he munched a couple of jelly babies at 11.30pm. #perks.
It was Gill who told us about the pump therapy that Charlie would be changing to. We had assumed, like so many others, that Charlie’s diabetes would be controlled through injections but Gill explained that the NHS Trust who were responsible for Charlie had been very aggressive in pursuing funding for the latest therapies and treatments of Type 1. As a result Charlie would be fitted with an insulin pump. We’d never heard of it.
An insulin pump is a small, pager like device that attaches to the body by a cannula. Tubing runs from the pump to the cannula and pulses tiny amounts of insulin in to the body every few minutes. Charlie was fitted with his 48 hours after arriving on the ward. When he tests his blood sugar, he dabs a small amount of blood on to a test strip in a blood glucose meter. The meter calculates his BM, and then depending on whether he is too high or not, bluetooths through to the pump and delivers a correction dose if it is needed. Likewise, when Charlie eats, we work out how many carbs he’s consumed, tap the number in to the meter and with all the rates and ratios set up in the background it works out the correct amount of insulin he needs for his meal. The Bluetooth fires up again and pulses it through. It was a marvellous bit of kit. Much less invasive than MDIs (Multiple Daily Injections), reduceing the number of injections we needed to give Charlie to almost zero. The cannula was changed every 48 hours and the insulin cartridge in the pump was replenished every 6 days.
There were drawbacks to the pump though. Have you ever tried to potty train a toddler when they have £4k of kit stuck in their bottom? It’s tricky. The pump itself wasn’t waterproof either, it needed to be detached and reattached before baths, showers and swimming. There was always a risk that the tubing would detatch if it caught on something. The pump gave off an alarm if there were blockages in tubing which happened frequently as insulin can crystallise when delivered in small amounts. That bloody alarm going off in the middle of the night woke us hundreds of times. It was always followed by panic – how long had it been going before we’d heard it? How long had Charlie been without insulin? Did he have ketones? Doing a pump change in the middle of the night was always worse than during the day.
The pump was worn on a Velcro belt around Charlie’s waist. We had a few of them but they were clumsy, cumbersome things that would scratch his skin. Changing nappies with a cannula is also an art, more things to fiddle with! The cannula itself was held in place by a circle of sticky plaster and it was in his bum. Putting one in stings – we slapped cannulas into each other’s arms in the hospital to learn how to do it. Charlie hated this part more than anything. He never seemed to bat an eyelid when he had his finger pricked for blood tests and that would be 10 – 12 times a day (on a good day), but cannulas sent him crazy. We would have to chase him, pin him over our knee and insert one, all while wrestling with a distraught or angry little fella. He would scream at us, tell us he hated us, mash his tiny fists against us and angrily assert that he WAS NOT DIABETIC. Those were the particularly hard days, when we wished we could take it all away for him. Instead we both maintained a matter-of-fact tone, this was getting done, end of. We cuddled him, cajoled him, agreed that it wasn’t fair, praised him, distracted him, whatever it took. Always, within minutes of it being done, it was forgotten and Charlie would be off again. As a show of solidarity, Chris and I would let Charlie put cannulas in us too. We would wear them to show him we understood what he was going through, and that if he had to do it, so would we.
The pump gave Charlie the flexibility to eat whatever he liked. The diabetics we’d known in our life Pre-D seemed to manage their condition not only with insulin but also with diet. Charlie’s dietician was clear – nothing was off limits but carbs needed management. Carbohydrate is sugar. As long as we carb-counted everything he ate and gave him the correct amount of insulin needed to break it down, he could enjoy a full, rich, varied diet with few or no restrictions.
Unless, of course, he developed Coeliac Disease.
When Charlie was four, an annual blood screen came back with an indicator that he probably had. Chris was devastated. Having experienced it for himself, he knew the impact it could have. Charlie already had so much else to deal with, this felt like another hammer blow. A couple of weeks later he had his biopsy which confirmed it. Having a gluten-free diabetic was a plot twist, but we knew we’d cope. Chris took this one on and the GF-Boys were born. They shop together, raiding the Free-From aisle with glee. Charlie took it in his stride as usual. He shows remarkable responsibility for a young boy, always checking if something is gluten free before asking one of us if he can have it, accepting without protest if it isn’t gluten free or suggesting an alternative, or saving something and giving it to Grace if he can’t have it.
It does mean however, he’s THAT kid at the party. When birthday invites come home, we always text to accept and confirm that yes, Chris or I will be there to do all the blood tests. We’ll bring a packed lunch with GF stuff for him to eat. Don’t worry about the birthday cake, we’ll sort him an alternative. Most of the parents are brilliant. Some go the extra mile and will want to know what they can get in for him to eat. They save the packaging so that we can work out the carbs (we’ve rifled through bin so many times just for that blessed information), and they make up a special party bag for Charlie with a GF treat in it. Chris and I are immensely grateful to them, anything that allows Charlie to be as normal as possible is welcome. Not everyone is like that. We know that Charlie has missed out on parties or sleepovers or play dates with friends because other parents are either scared of his condition and all it entails, or it is a hassle to them. Social media is the eye to that world and it does hurt to see his friends enjoying themselves in various places without him. We could challenge it. We could confront these parents and demand to know why he’s missed out on an invite yet again. We choose not to. Instead, when the offer is extended, Charlie goes, and we go along too. We look after him and follow our regime, and when the questions start: “Do you have to do that with every meal?” “How often are you testing?” “Will he always have it?” We answer them, because that’s the only way we are able to advocate for Charlie in these situations.
In March 2016, the warranty on Charlie’s pump expired (hurrah, we could remove it from our household insurance!). Dr Abitha offered us yet another alternative – the Omnipod. Using similar principles to the pump, this was also an insulin delivery system, with a Bluetooth handset. But the Omnipod was matchbox-sized, waterproof, had a soft cannula and no tubing. It is attached by a big sticky patch and, although the cannula is initially fired in to his flesh using a very fine needle, what is left in is a flexible, soft tube, about 5mm long and 1mm wide. Self-contained, durable, discreet. No nasty scratchy Velcro belt, no tubes to catch on tables or in a zip, no bruising from the cannula. It has been a game-changer.
Earlier this year, Charlie’s diabetic team contacted us to ask if we’d like to take part in a new trial. The technology we would be testing has been on the market for a number of years, but only for adults. Now we were asked if Charlie would like to be part of the trial for children. In February, we all trotted off to the hospital and Charlie was fitted with a sensor. (For diabetic techno geeks; the FreeStyle Libre). About the size of a 50 pence piece, the Libre also sticks on Charlie’s arm, with yet another cannula, and monitors glucose readings. The USP of this marvellous gadget is that no finger-pricks are required! The ends of Charlie’s fingers are peppered. His little digits are pricked and stabbed multiple times, daily, to squeeze out a drop of blood or two for his regular testing. With the sensor, the handset is swiped over that little round button on his arm, like the scanner in a supermarket, and the number comes up. Not only that, but a little arrow appears and shows you the direction his blood sugar is travelling, whether it’s creeping up or plummeting, or – please, please, PLEASE – stable! It helps us to spot trends, to intervene when we maybe wouldn’t have, and arms us with even more figures and information. For Charlie, the impact is more tangible. With a quick swipe, we can tell if his blood sugar is ok, without the need for him to drop what he’s doing, find a sink, clean his hands and do a regular blood test.
So, the testing. We have to blood tests every 2-3 hours, day and night. Chris and I both set alarms so that we don’t sleep through. The longest we’ll sleep for in any one period is about 3 hours before getting up to test Charlie’s blood sugar. Why yes, completely exhausted, thanks for asking.
During the day, Charlie is tested before meal times, two hours after he’s eaten, before any activity like PE or Wake & Shake, and then through the evening as a matter of course. Our routine goes something along the lines of:
7.30am test (pre breakfast)
10.15am test (pre break-time)
12.15pm test (pre-lunch)
2.30pm test (post lunch)
3.15pm test (pre-afterschool /sports club)
5.00pm test (pre-dinner)
7.00pm test (post dinner)
And then we’re back to 6.20am.
That’s assuming no hypos. If there’re hypos, add an extra test in 15 minutes later, and follow it up with one 30 minutes after that, to make sure his sugars have stayed level and not dipped. Keeping up? But if he says he feels low, test. If he’s been racing around at break and there’s maybe over an hour before he’s actually due a test, probably best to test him to make sure he’s not hypoing and doesn’t know it. Double hypo? Test, 15 mins later test, 15 mins after that test, 30 mins later test. Gone too high? Deliver the correction, wait a minimum of 2 hours, then test.
Conversations in our house go a little bit like this: “But he’s had pasta for tea. Right, so we’ll probably use an extended bolus for that, it’s a slow release carb, 50g which is about 3.1 units of insulin. Let’s give him a third now and then extend the rest over 3 hours? Wait, that didn’t work last time did it, let’s extend the whole lot over 5 hours, maybe that’s going to avoid the hypo. And don’t over treat the hypo, that’ll send him high and we’ll be chasing his number all night to try and get it back down again. He’s eating slightly earlier than yesterday but his carb ratio changes on the hour, should we zap him now and get the better rate or wait and do it after? Let’s do it after, he might want seconds. Same with breakfast, let’s try and zap him before 9 when his rate drops. Although, he has had porridge this morning, and that sent him high last time, even though it’s right if he has cereal bars. Mind you, he does have PE early so he’ll need something to keep him up for that.” And on, and on, and on…
Our eldest, Grace, was 4 when Charlie was diagnosed. In the immediate aftermath, Chris and I wanted to spend every hour at Charlie’s bedside which was a very confusing time for her. Grace is bright as a button and very sensitive, she found that whole period as unsettling as we did. Asking her about it now, she recalls very little. She remembers the big play room in the hospital, and spending lots of time with Auntie Steph. She remembers Charlie lying in a bed and buying him balloons as a get-well-soon present. What she doesn’t remember are the times she woke up crying, desperate for a cuddle, sleeping in our bed with either one of us while the other stayed with Charlie. She doesn’t recollect how, as Charlie recovered and got back on his feet, she would play with him, taking his hand as he toddled down the hospital corridor, helping him select a game or puzzle for his room. She drew pictures and cards to decorate his bed, writing how much she loved him, wishing him better soon, how much she missed him. She was delighted when she found a copy of The Gruffalo and Dear Zoo in the playroom library, both books Charlie adored. She squirrelled them away for all four of us to enjoy. Chris and I explained to her what had happened to Charlie in as simple and gentle a way as we could. We didn’t want to frighten her, it was clear that she knew something had happened and we didn’t want to make it worse. As siblings, Grace and Charlie have always been close. As a big sister, she excels. When Charlie was a tiny baby, Grace was so eager to be involved in looking after him. She would fetch nappies and wipes, help feed him, then rub and pat his back as he was winded. Today, as ever, she is keen to be involved. She knows the diabetes jargon as well as we do, having lived it as long as we have. She looks out for Charlie, sticking to his side when off playing, asking him if he feels OK, checking in on him if he’s quiet for too long in his room (that’s a rarity). Diabetes has had an impact on her too, there have been many occasions where plans have been cancelled or altered because we need to address something. It has matured her. There are no tantrums or angry protests; instead she’s developed her own routine. If Charlie is admitted to hospital, she will quietly pack an overnight bag for herself, gathering her bits and pieces and then head off to Grandma’s or Auntie’s without batting an eyelid. We’ll always phone with an update and she’s the first to ask to speak to Charlie. Grace and Charlie are buddies; we hope they stay that way.
Illness and poor management can result in blood sugars being too high. This hyperglycaemia is an all too familiar scenario. It affects Charlie’s concentration and behaviour. Chris once described it as Charlie appearing drunk which sums it up quite well. His energy levels go through the roof and his already boisterous demeanour becomes super-charged. There have been hundreds of occasions when Charlie’s behaviour has changed and our immediate thought is to haul out the test kit and rule out a hypo or a hyper. There’s no small amount of relief to be felt when the number pops up and we can say that actually, he’s just having a regular tantrum or meltdown, allowing us to be ordinary parents and not ones who need to administer a medical intervention, however small. I know it must seem strange that we find a reprieve in what could be an almighty display of temper but we welcome them in perverse way! There are long term health risks to high blood sugars. The fine capillaries in the eye get gummed up with excess sugar which can lead to retinopathy and from that deterioration in vision. The same happens in the vessels in toes and fingers which can lead to nerve damage and loss of sensation. Likewise, the functions of the liver, kidneys and heart can be affected. As parents, our concerns are that because Charlie was diagnosed so young, he will have dealt with the effects for a much longer period than say, a young adult or teenager who developed T1 later in life. By the time he reaches 20, he will have had 19 years of managing these beastly elements. This is precisely why we are teaching Charlie to be responsible for his condition. It is only with compliance that the effects and can delayed or avoided. We want our boy to live a full, long and healthy life and the best way to do that, from a diabetic perspective, is to stay in control.
High blood sugars can indicate something altogether more sinister. If Charlie doesn’t get enough insulin, or the supply of it stops, he can develop ketones. Ketones, put mildly are horrible and dangerous b*ggers. Insulin breaks down sugars to produce energy. If no insulin is present, the body will look for an alternative source of energy, and so it turns to fat.
“Well that sounds wonderful, who wouldn’t want to break down fat? **reaches for cake**
Here’s the kicker. The bi-product of burning down fat is ketones, and those have nowhere to go, other than in to the bloodstream, filling it full of acid. DKA – Diabetic Ketoacidosis can develop very quickly, especially in young children. It can make you tremendously ill and, left untreated, will be fatal. That’s not scare-mongering; it’s a stark reality that we face every day. We didn’t know Charlie was Type 1 until he developed DKA which led to his initial collapse. There are other risk factors too. Illness, hormones or surgery for example. Binge drinking is also a major contributor to cases of DKA, not something we have to worry about as the parents of a 7 year old (I hope), but it will be a growing fear as Charlie gets older. That said, we refuse to limit his experiences of life and we have faith that he recognises and adapts to the different challenges that T1 presents.
Tied in with this is the hope that improvements are made in therapies and treatments available. If we could have one wish, it would of course be for a cure. It would put an end to Chris’ incessant googling on the subject for one. Year on year an embarrassment of articles is published that dangle the possibility, the promise that an ultimate remedy is just around the corner. We pray that day comes in Charlie’s lifetime. We long for him to enjoy a carefree existence, when he doesn’t have to restrict or regulate elements of his lifestyle.
Until Charlie was diagnosed it was a luxury Chris and I completely took for granted. With Grace, we were able to call upon pretty much anyone that we trusted, to look after her. Short notice wasn’t a problem. Invites to parties, weddings, socials, we could accept them all on the spot, relatively secure in the knowledge that we would be able to find a babysitter. With Charlie’s diagnosis came a drastic change in our dynamic. In the 6 years since T1 invaded our lives, we can count the number of times we have attended a gathering together, as a couple, without children, in single figures. Charlie’s care is all encompassing and complex. We have limited choices not only about who we could trust to take it on, but also who would want the responsibility of it? Instead, we embrace being together. We are a package, the four of us. It feels odd, off balance, if one of us isn’t there, from the mundane to the exciting. But we don’t begrudge anyone who has more freedom; in fact I’m adamant about it because that would allow T1 to win and, whilst it may dictate many terms for us all, it won’t
take the best of us. Charlie has inherited my belligerence; we’ve always said Charlie has Type 1, but it doesn’t have him and it never will.
Charlie embodies so many qualities that make us proud. His exuberance and enjoyment of life is in no way compromised by having diabetes. Our sport mad, gregarious, extroverted boy is the master of adaptation. His resilience is astonishing. He is a bundle of energy, in perpetual movement and he is thriving. Diabetes does not form part of his identity, he isn’t “that diabetic kid”, he just happens to have it. Throw what you like at him or at us. We’re Team Pockett, who are you?’
Claire, writing for The Mother Side xx
If you are concerned about a child (or adult), or simply want further information about diabetes, these are good starting points:
– Diabetes UK
– Children with Type 1 (Parent to Parent support and information)
– Diabetes Support (Facebook Page)
– T1 International (Facebook Page)