Diabetes, Education, Health, Parenting, T1D

Managing mood changes

Managing mood changes

Today I would like to open the doors on what goes on behind the scenes of a T1D child. What do they feel that we parents cannot see? What do they want to tell us but are too young to possess the vocabulary or verbalise their emotions? These, and many more questions, often race through my mind. Taking on the full time job of a pancreas isn’t just about calculating carbohydrates, night time blood tests or insulin pump therapy; it is equally as important to understand the side effects this disease has on your child’s brain and subsequently, personality.

It all starts with the physiology of diabetes. I will never be able to fully appreciate what our son physically and mentally feels when he experiences a hypo or hyper, I can only describe to you what I have been told. According to the experts: diabetics, when a child is having a hypo they feel weak, dizzy, confused and shaky. This fantastic 3 minute video of four woman describing how they physically feel and mentally react during a hypo is well worth your time.

excuse me while

In the jungle, the mighty jungle

It is quite common for a T1D to suffer from ‘hypo-unawareness‘, particularly in young children who are naturally less aware of their body and how it functions. Hypo-unawareness is physically dangerous, but it is also a mental battle for the patient and for those who care for them. When our son Noah, is feeling these symptoms his insulin pump will give me a warning alarm (caveat: there is a 20 minute, give or take, communication delay between his body and the pump) and I can treat the hypo for its physical effects. There is no medical treatment for the mental effects of a hypo. In our experience, Noah morphs from an adorable kitten to a roaring lion in a nano-second. He goes from “Mummy I love you to the universe and back” to a vein-popping, red faced animal screaming inaudible words that make no sense anyway. Unlike typical child-like tantrums (which he naturally has too, yey! ūüôā these appear as is if from nowhere. Sometimes his behaviour is quicker to burst forth than the pump’s warning alarm and we can tell he is having a hypo simply from his monumental meltdown over inconsequential nothingness. Even though I know his diabetes is just ‘having a conversation with me’, I confess, I sometimes feel embarrassed when we are out in public. There are occasions when I have been in the supermarket or walking down the street and Noah’s diabetes wants to have another ‘chat’ with me. Millions of parents know the look you get from strangers on the street; you know the one, it appears that you cannot control your own child. I get those same looks but sometimes I just want to scream ‘you have no idea what he battles with inside!

The value of a support network

Noah can also become confused during a hypo and he finds it difficult to concentrate. Whilst these are less fiery side-effects they cause me more long-term concern than the tantrum-style behaviour. I know the meltdowns will become easier as he gets older but he has already started school and now I find myself wondering how hypos will affect him in the future. How will Noah cope with T1D together with his education? Will it impact his academic ability? How can we help him now to learn to overcome these issues down the line?

According to this scholarly article we are already using the best possible therapy to support Noah’s mood and behaviour. ‘Continuous subcutaneous insulin infusion’ or insulin pump therapy has been very effective in reducing the frequency of hypos in T1Ds and the results show improved mood and behaviour changes in young children. So is that all that we have at hand to help? My answer to this is: I don’t think so. Whilst it is notoriously difficult to measure neurological impact of T1D and, from what I can gather, is something that experts vary in opinion on, frequently the following cognitive elements are reported to be affected by T1D: intelligence (general ability), attention, processing speed, memory, and executive skills. I am not a scientist and I haven’t done any research into this, I am also only two years in as a T1D carer but my firm belief today is that all of these cognitive domains can also be greatly influenced by the parents, teachers, siblings, social circles, mentors and extended family etc. who surround the child.

And what about hypers? Someone once described to me that a hyper is like having a massive hangover, but without the nausea part. The patient is very thirsty, has severe headaches and lethargy. It isn’t rocket science to realise that these are not attributable feelings to a productive day at school or work. For the last year, Noah experiences an (as yet) unresolved hyper every morning after his breakfast. His glucose levels soar, sometimes triple the amount of a non-T1D and try hard as we might, we haven’t yet fixed this ‘bug’ in his daily routine. Nevertheless, off he marches every morning to school, feeling like he drank himself under the table the night before. For now, I simply admire his strength but I worry about when he becomes a teenager, how will he find the will to keep concentrating on math, or history or grammar when he mentally becomes aware that he has a choice?

And speaking of teenagers, puberty is a notoriously challenging period for many diabetics, but I will leave this topic for another day, another year even. The underlying point here is that T1D presents enormous challenges both physically and mentally. Both require a bachelor degree level of understanding to deliver optimal short and long term care. Both take place behind the scenes and in front of a crowd but T1D is so massively misunderstood by many (including me before my son’s diagnosis) that raising awareness and understanding is a monumental challenge, but one that many can be proud to be passionate about.

#weneedacure

Diabetes, Health, Parenting

ÔĽŅDesserts 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.