Diabetes, Education, Health, Parenting, T1D

When ‘I’ is replaced by ‘we’…

“When ‘I’ is replaced by ‘we’…

…even Illness becomes Wellness”. I came across this quote from Malcom X and find it rather fitting for this blog post. This week is Diabetes Awareness Week in the UK and today I wish to share with you a brief and personal view on the clinical team who treat our son Noah. I have discussed previously some of the challenges Kasper and I faced during our early training. I want to emphasize again that without these professionals our child’s life expectancy would be much shorter and his daily physical struggle would be so much harder. When Noah was diagnosed, we didn’t realise how privileged we were to have access to this expert team. I have since learnt that even in research-intensive countries, like the US or the UK, access to similar resources coupled with high quality care varies substantially. It is for these reasons that shining a light on the magnificent work that takes place behind the scenes is, for me, a no-brainer.

Angels in disguise
Els-van-Straaten-e1340026244978
Dr. Els van Straaten

Let me take you back to the day Noah was diagnosed in September 2015. We left the hospital carrying this new bomb shell, with the promise that someone was going to call us and tell us what to do next. Dr. Els van Straaten telephoned that evening; earlier that day Noah had received his inaugural boost of chemical insulin and she needed to advise us on getting Noah through his first night. The following day, puffy-eyed, bewildered and deeply confused, we arrived at the DiaBoss clinic located in OLVG West Hospital, Amsterdam, The Netherlands. The clinic quickly became our home from home. Over the next two weeks, Kasper and I underwent intensive training on the what, how, why etc. of treating a child with T1D. One of the first things Dr. Els van Straaten said to us that morning was ‘I may have worked with diabetic children for over 25 years but in 12 months time, YOU will be the experts in your son’s diabetes‘. That sounded totally alien to me at the time; I was struggling to understand the simple stuff like why we count carbohydrate units and not sugar units in food, or how many times a day he would need his blood tested, but I never forgot it. What she failed to mention, however, in that unforgettable moment, was how this metamorphosis from ‘ignorant to expert’ would only take place because of the incredible work, dedication, expertise and patience exhibited by herself and the team around her. We were not alone.

Marion-Tillman-e1340026132840
Marion Tillman

Meet Marion, Noah’s diabetes nurse. Marion is really special. Our daily/weekly contact always starts with Marion; never has her patience faltered nor was she too tired or too busy to extend her unyielding care to Noah. What many of us often forget, or underestimate, is the emotional trauma that a T1D child suffers following diagnosis. For some this lasts a few months and for others it takes years to overcome. We all remark on how small children are tougher than they look, and it is very true; but still they suffer deep trauma. Noah exhibited the impact of his trauma when he became selective mute at school and shut down completely in front of everyone, except his family, over an extended period of time. The reason I am telling you this is because he didn’t shut down for Marion. She had gained his trust like a family member, he knew he was safe with her, he knew she cared for and helped him. That, together with her exceptional experience, is why she is a true angle in disguise.

Taking control back

ninjas-37770_1280Kasper and I have been working with the clinical team at ‘DiaBoss’ (based on the concept of being the ‘boss’ of your own diabetes, and not the other way round) for almost two years now. From our perspective, they operate an unequivocally effective triage of priorities. Firstly, they have built a team of highly skilled pediatricians, nurses, dietitians, child psychologists and administrators; all specialised in treating T1D in young children and juveniles. In short, they are the ninjas when it comes to fighting diabetes. Included in this, is their fight to push the boundaries and further improve health insurance coverage for T1D treatment here in The Netherlands. Secondly, these ninjas not only work with the latest treatment techniques and technology, they also actively seek input from world class experts when new questions or puzzles arise. And thirdly, they bring a superhero level of PMA (positive mental attitude) in delivering tailor-made care; not only for the patient but for the whole family. They put the ‘we’ into everything they do so families like us and kids like Noah don’t feel so alone in the struggle to learn to live with this disease.

Side by side

I am always touched by the interminable enthusiasm the DiaBoss team extend when asked for help in non-clinical matters. They understand how extremely important the parent’s coaching role is in the child’s long-term health. This understanding lays the foundation for their support also within the child’s environment. When Noah started school, Marion visited his school, spoke to his teachers, provided them with information and further support when they needed it. That level of care and attention for one child is mind-blowing when you give it some deeper thought. How many visits must they make each week or month? And yet, these resource-intensive initiatives are exactly what guarantee The Netherlands can truly acknowledge they lead the way in juvenile T1D care.

Here is my list of highlights where I believe DiaBoss prove they turn adequate care into phenomenal care:

  • They hug you when you cry; they completely understand how bewildered and terrified you feel. They are a clinical team who operate like human beings.
  • The DiaBoss helpline is open 24 hours a day, 7 days a week; we can always speak to an on-call diabetes pediatrician who knows everything about our son’s specific case.
  • A few months ago Noah got really sick: he had classic stomach bug symptoms. We had no idea he was suffering from his first diabetic ketoacidosis. His nurse, Marion, distinguished the difference over the telephone and made sure we got to the hospital on time.
  • They never run out of patience when you accidentally get a correction bolus wrong, forget to change a cannula or misunderstand anything they tell you. Since I often converse in a foreign language with them, this happens to me frequently 🙂

#weneedacure

Diabetes, Health, Parenting

ï»żDesserts is STRESSED spelled backwards 

‘Desserts’ is STRESSED spelled backwards.
Noah_2016 (85)
Noah with his head in the biscuit barrel

Due to the staggering global prevalence of Diabetes (all types), it is one of the most intensively funded and researched autoimmune diseases in the world. This NIH report [1] alone is very interesting when you consider that diabetes comes 7th on the US mortality list (after cancer, heart disease, lung disease etc.) and the 2015 Edition of the IDF Diabetes Atlas report confirms some further worrying results such as it is still unclear why Type 1 diabetes is on the increase globally and why Europe and the Middle East suffer the highest rate of type 1 in children. But it isn’t just clinical research or the pharma industry that invests heavily in this area. As with any other disease which is affected by diet, the food industry will be sure not to be left behind. Companies the world over invest eye-watering amounts of cash to develop and market specialised products for those living with diabetes or other diet-dependent conditions such as coeliac.

Thankfully, the treatment and understanding of T1D has advanced immensely since the end of the last century, where it was widely believed that a low sugar diet was the only way to manage it. Since the 1970’s, supermarkets and pharmacies have been stocking low or sugar-free products to cater for patients with T1D by offering goodies like ‘diabetic chocolate’ and ‘diabetic jam’. The term ‘goodies’ is used loosely here as it’s doubtful they were very tasty and are reportedly prone to causing diarrhoea. Pleasant. Prices were imposed at a premium which forced millions of families out of the market for these products. Instead those less fortunate must choose between withdrawing sugar altogether or facing the longer term prospect of serious health complications as a result of consuming regular sugary products. Neither of those choices sound very appealing to anyone.

From cow to calve

cow-1204968_1280Times have changed though, and in The Netherlands (where I live) those ‘diabetic specific’ food products in the supermarkets are almost non-existent. Why? Well, contrary to popular ignorance (mine included before Noah was diagnosed) sucrose, glucose, fructose and dextrose are not actually ‘bad’ for a diabetic. In fact, just like the rest of us, they play a vital role in a balanced diet. This may be bad news for the food industry as their cash cow dwindles (although we shouldn’t feel too concerned, they have the gluten-free Coeliac “cash calve” to nurture to maturity now…) but it is good news for diabetics. Our improved understanding of the treatment of diabetes means diabetics can basically eat any food group they wish. Of course there are certain foods that work better for a diabetic than others; a low carb diet appears to be getting good long term results on reducing the patients HbA1C.  The freedom one gives in the treatment of their child’s diabetes must address reducing the risk of that child developing food association issues later in life, whilst also trying to apply the principle that a diabetic should lead a normal and balanced life like anyone else.

chess-1163624Checkmate

With that in mind, why are desserts so stressful for me as a parent of a T1D child? All kids love a dessert after dinner right? And let’s not forget: desserts are the currency that every parent can bargain with to bribe their child into eating a savoury course properly. It’s a classic and usually effective battle strategy deployed to overcome the food war on most evenings. The underlying principle being the important lesson in discipline and general respect for food. But even though I have told you we are encouraged to treat our children like any other child, there are two significant issues with desserts. Firstly, there are little to no prefab desserts that are both healthy and appealing to small children, and which do not cause a rapid spike in sugar levels immediately after consumption. These spikes are impossible to effectively counteract with chemical insulin. Natural insulin (in the body of someone who does not have diabetes) instantly works and the pancreas provides the correct dosage – always. Secondly, and for myself at least, the most stressful issue is that diabetics must calculate and inject insulin BEFORE they eat a meal.

Allow me to elaborate on the complications this entails. An adult usually lives a fairly well planned daily routine; they know when they will eat, sleep, exercise etc. They also know how hungry they are and can commit themselves upfront to how much food they will eat. As a result, they know more or less how much insulin they need to inject before their first bite. Now let’s consider the same scenario for a diabetic child: because the insulin is injected before the child starts eating you need to be certain of exactly how much the child will eat. Parents the world over understand how unpredictable this decision is under normal circumstances. Parents of young diabetic children are constantly battling between over and under dosing their children at every meal time.

girl-147105_1280Imagine I have calculated the main meal and dessert to equal 43 carbohydrates and I have injected the required amount of insulin into Noah to counteract these carbs. Unfortunately, after 6 bites of the main meal, he declares he doesn’t like what’s on his plate and flatly refuses to eat any more. In a normal situation, like with my daughter, I would persist and try to ride out the inevitable tantrum. Failing that, I may use the dessert as a bargaining tool or I may opt for the stern discipline route and insist she either eats what is on offer or goes hungry.  With a diabetic child however, everything is turned on its head. To begin with, tantrums often lead to hypos and considering Noah is now loaded with insulin and refusing his food, I must face the fact that he is guaranteed to go into a hypo; meaning I will have ‘overdosed’ him if I don’t resolve the problem quickly. Sticking to ones guns and taking the discipline route is never an option in this case. I have no choice but to counteract the insulin by offering Noah an alternative food option. This is always, and understandably, met with a loathing scowl from my daughter who knows she would never get away with that. I can’t blame her if I am honest. wisdom-1501263_1920Our personal situation is further complicated by our son’s blanket refusal to eat all things ‘fruity’. Noah refuses to eat any fresh fruit, jam, ice-cream, cake, sweets, biscuits, yoghurt…you name it, he refuses it. He is however, a chocoholic, but you show me a chocolate-based dessert that isn’t laced in glucose-spike-inducing-sugars! This is VERY frustrating and totally unrelated to his T1D. I know he will back down one day but I really hope it is sooner rather than later.

wizard-1662948_croppedSo, dessert time is stressful in our house. Once we have weighed the ingredients of the main meal, calculated the carbs, added the dessert carbs, tested Noah’s blood glucose levels, decided on the amount of insulin to give him, popped our wizard hat on and predicted how much he will actually eat, put the plate in front of him and kept our fingers crossed all will go smoothly; we may still be faced with the dilemma of throwing our parental discipline out the window, suffer the wrath of our eldest child whilst trying to explain that in this case one rule does’t fit all and instead give our T1D kid an extra dessert just to counteract the effect of the already injected insulin so we can be sure we are keeping him safe through the night…ARGH!

[1] The NIH or National Institutes of Health is a part of the U.S. Department of Health and Human Services, NIH is the largest biomedical research agency in the world.
Diabetes, Health, Parenting, T1D

In the dead of the night…

One of the most surprising aspects of taking on the role of a pancreas on behalf of our child has been the silent work that takes place in the dead of the night. This definitely came as a shock to my husband and I. By the time Noah was diagnosed he was 3 years old and sleeping well through the night. Broken nights were certainly becoming a thing of the past. Kasper and I had started to get our energy levels back up and balance was returning to our daily lives. Then overnight, we were thrown back to the days of having a newborn in the house, where you are dragged out of bed every night, sometimes multiple times.

Night-time hypos (low blood sugar) or hypers (high blood sugar) are the bane of every diabetic parents being. It isn’t just the physical side effects of endless sleepless nights, it is also the feeling one gets of being utterly alone in this world full of needles, pumps, insulin, dextrose, carb-counting and hospitals etc. We know we are not alone, we know there are millions of others in the same position, but in those moments when you look at your sleeping child and try to figure out how much correction bolus they need to bring their blood sugar levels down, you feel very lonely.

In our experience, dealing with a night-time hyper is pretty quick. Noah’s pump alarm beeps when his blood sugar levels are starting to get too high. We still use a baby monitor in his bedroom so we can hear when the pump sounds an alarm. One of us, depending on who has the night shift (yes, there are ‘shifts’ and they are absolutely bloody vital), will drag themselves out of bed and go to fix it with a correction bolus. All in all, a hyper usually takes less than 5 minutes to deal with.

black-white-1444737_1920Night-time hypos (or hypoglycemia) on the other hand are an altogether different kettle of fish. Night-time hypos are nothing short of horrific and they take a long time for parents to mentally come to terms with. The idea that my child could slip unnoticed into a deep hypo and never wake up while I am sound asleep, not having a clue as to what is happening is unimaginable, and yet for some it’s a reality. It is very difficult to get a grasp on how many diabetics die of hypoglycemia each year, largely due to the fact that immediately after death the body can still release some glucose. However, in 2011 the JDRF (Juvenile Diabetes Research Foundation) produced an advert stating that 1 in 20 diabetics will die of low blood sugar. This figure was based on studies by P.E. Cryer, T. Deckert and W.M.G. Turnbridge. Obviously there are many different factors that come into play here and I will touch upon a couple of these. Firstly, the chances of this happening in countries where diabetes treatment and care are at the top of their game (Sweden, The Netherlands, UK, US etc.) are SIGNIFICANTLY reduced and are rare as a result. Secondly, the latest insulin pumps – sometimes referred to (annoyingly) as an artificial pancreas (they aren’t
yet) – have warning alarms when hypos are likely to occur.

woman-bed-scared-canstockphoto22617451Nevertheless, immediately following Noah’s diagnosis (and prior to him wearing an insulin pump) both my husband and I suffered many nightmares on this issue. Sometimes we would suddenly sit bolt upright in bed and frighten the hell out of each other with our night terrors. It took months for us to get our heads around this and learn to cope with the fear of losing our son in his sleep. Nowadays, we put all our trust in the technology, the little insulin pump that he wears round his waist day and night. We have to trust it to do its job and alert us when Noah is heading towards the danger zone. And thank God we have access to this incredible technology, because without it we would be treating him ‘blind’ and sleeping with one eye open every night.

Even when a child wears an insulin pump there are plenty of down sides to night-time hypos in young children, here are my personal top 3:

  1. Young children’s bodies are constantly changing and growing. These changes have an effect on the levels of insulin a child needs. Every day is a new puzzle of trial and error for us. Some days that means we are up 4-6 times a night dealing with night-time hypos.
  2. Have you ever tried to wake up your child in the middle of the night and make him eat a dextrose tablet? Or (if the hypo is really severe) follow it up with a brown bread sandwich? It takes AGES to wake them up and AGES to convince them to eat that lovely brown bread sandwich. When this happens – it absolutely, totally and utterly sucks. For all of us.
  3. Even after treating a hypo and even when you know your child has the latest in insulin pump technology, you still have to find a way to go back to sleep because you need your strength to cope with diabetes tomorrow (and work, rest of family, daily life etc.). You need to put your worries aside and get some shut eye.

#weneedacure

 

Diabetes, Health, Parenting, T1D

Top 3 Questions I am often asked

1: What were Noah’s symptoms?
This is a very common question and yet one that is not easily answered. The pancreas doesn’t shut down from one day to the next. Instead it keeps on fighting and trying to do it’s job. This makes spotting symptoms incredibly hard for parents as the pancreas sometimes works then slows a bit, then picks up again before repeating the cycle. Rather like the Welsh valleys as they rise and fall, so do the symptoms. For a couple of weeks your child is not his usual self and then for a couple of weeks he is. Trying to nail down what your concerns are and why you are having them is not easy.

In our case I recall that eight months before Noah was diagnosed (he was two and half years old at this point) I was having concerns about his immune system and I spoke to his GP about it. It is very hard to articulate yourself when all you can really tell the doctor is “something is wrong with my son but I don’t know what and I can’t tell you why I think this”.  I was advised to wait and see how he was in a few months (it was winter and kids are often sick during this time).

By the time we reached summer my concerns were only getting worse. Noah was losing weight and refusing to walk or climb stairs any more. He didn’t want to play outside with other children, he only wanted to sit indoors and play quietly. He started sleeping longer during his day nap (from one to sometimes three hours long). He stopped wanting to toilet train at day care and his carer diligently noticed all the above signs. He started getting black circles under his eyes, he looked exhausted. He lost his playful, fun-loving character and instead became clingy and insecure. And then the big symptoms came – he wanted to drink LOTS of water, especially before he went to sleep and he was wetting himself (despite using nappies).

We took Noah back to his GP and they did a urine test. When Noah was a newborn he had suffered from bladder and kidney infections. The GP informed us he had another urine infection and we should make an appointment with his pediatrician at the hospital. He prescribed more antibiotics.

Two weeks later we were told by his pediatrician that there was no urine infection and they could see nothing wrong with him. We described his symptoms again but still they couldn’t tell us what they meant. They took another urine sample and we were advised to spend the next two weeks trying to get Noah to put some weight on, to feed him with whatever he wanted to eat and if it didn’t work to come back in a fortnight for more tests.

The following three days Noah deteriorated a lot. He had no energy, he looked miserable and he kept wetting himself all the time.

On the fourth day, Monday 21st September 2015 the hospital called and asked us to bring him in immediately. The urine test had shown extremely high glucose levels. This was our D-Day – Diagnosis Day.

2) Is there a cure?

No. End of story.

3) Why does Noah have T1D (Type 1 Diabetes)?

The quick answer: who knows?

The longer answer is multifaceted. There is no T1D in our families (on both sides) so there was no obvious link there. Recent research is starting to suggest that infants who are exposed to strong antibiotics are potentially at higher risk of immune deficiency diseases like T1D. Noah was 6 weeks old when he had a urine, kidney and blood infection. He spent a week in hospital and received antibiotics – maybe this is why…but actually we don’t know for sure.

What is certain is, as parents, we did nothing wrong. Noah did nothing wrong. You cannot get T1D by eating the wrong foods. T1D is not contagious. Sometimes life just chucks a pile of crap your way and it’s your choice whether you sink or swim.

Diabetes, Health, Parenting, T1D

Learning to stick needles in your child

You don’t need to be a parent to imagine the anguish one goes through the first time you are faced with a needle in one hand and your child in the other.

If you have reached this point then you’ve been trained by your child’s nurse or pediatrician and you have stuck a few practice needles into some soft rubber to get used to the feeling of cold metal pushing into something that is supposed to resemble human skin.

But now you need to do it for real. I want to share with you my experience of these unique moments where I had to learn to do something totally unimaginable to my 3 year old son. Your experience of this might be different, I don’t know. T1D (Type 1 Diabetes) is a personal disease and different people experience it in different ways.

The practice run is over. You need to load the finger prick pen with a small lancet needle, pull the trigger back and find a soft, warm spot on the side of one of your child’s fingers. You need to push the button and make your child bleed. You have no choice. You don’t look in their eyes because you know they will see your fear. They will see how much you are fighting every single parental instinct inside your body. They will hear the screams inside your head. They will feel the warm tears drop on your cheek.

portrayal-89189_960_720You push the button and immediately you see the pain you have caused. You see your child’s eyes asking you ‘why?’ as you milk their tiny finger for a drop of blood. You tell them how brave they are, how important it is you do this to them and how they will feel better soon. You want to vomit. You want to take T1D from them and put it inside you instead. You’ll do anything to take their pain away but you can’t.

And then you feel some relief, some strange joy that you made it this far. You took your first blood glucose reading and another step closer to being their pancreas. You did it! And though you know you have to do it a million times again, you also know it will never be harder than the first time. You breathe again. You look at your child’s nurse and they are beaming back at you. Their training is working and you are learning how to keep your child safe again. You turn to face your child and there are no more tears, the pain has quickly subsided and something else has distracted them again. Phew. Your muscles relax, the tension subsides and you feel like you have reached the surface again.

T1D waits for no one. It is a relentless 24 hour cycle of work, worry and pain. No sooner have you recovered from your first blood glucose reading you are quickly heading straight to the next hurdle. Inside you are begging for a break, some time to digest everything that is swirling around you. Now you are being asked to calculate the required insulin per carbohydrates that will be consumed for lunch. You have a brief flashback to high school Mathematics lessons and wonder why you didn’t pay more attention. You make a spot calculation but you know you need to double and triple check you have done it right. You can’t trust yourself anymore because your head feels like a ship wreck stuck all alone at the bottom of the sea bed under cold and murky water. You know you cannot think clearly but you must make life-saving decisions now and forever. You quickly wonder how you will manage to do this while juggling the shopping in the supermarket or when you have been woken from the dead of your sleep in the early hours. But you park this thought because the nurse is asking you to put a clean needle on the insulin pen and give your child a shot.

Your hands begin to shake again (will that ever stop?) and sweat begins to surface. Take another breath you tell yourself and just do this. Get it over and done with. If you delay you prolong your child’s fear. They know it is coming, they see it happening. Don’t make it harder for them just because you are scared witless. The insulin pen is ready and double checked. You turn to face your child.

You steady yourself and gently pinch their perfectly pure skin. No delay. In it goes. Push the button. Release. Withdraw the needle. Rub the punctured wound. Grab them in your arms and wrap yourself around them. Dry their tears and fight back your own. Tell them they are a superhero. Tell them how proud you are of them and how much you love them. Silently beg their forgiveness and curse this world you find yourself in.

My lowest point of learning to inject my child was two weeks after his diagnosis. By this point the finger prick tests weren’t too bad for him anymore. He fought them in the beginning but what the nurse told me was true, kids very quickly learn to accept at such a young age. The insulin shots were more painful for him though and that meant more of a struggle to accept. Noah started to cry the second he saw the insulin pen and then he would say ‘I’m so sorry Mama, I’m sorry, I won’t be naughty anymore’. My heart broke into a million bits when I realised he thought we were sticking him with needles as a punishment. He was 3 years old and too young to understand what T1D is, too young to even understand the concept of ‘forever’.

After about 2 months of fighting the insulin shots he relented and accepted them. Nowadays he fights when a new cannula is inserted for his pump or we need to change the sensor on his arm. But in the early days when we had to learn ‘pen therapy’ he was enduring 4 shots a day plus 6-8 blood tests (more if he was sick). That is a lot of needles for any kid to accept don’t you think? I had no idea so many needles were required on a daily basis before Noah was diagnosed. I, like many millions of others, was totally ignorant to the complexities involved. #weneedacure