|You get Diabetes Type 1 (DT1) from eating too much sugar||Wrong! Insulin-producing cells in the pancreas, for one reason or another, are being destroyed. NONE of those reasons include eating too much sugar.|
|You can’t eat sugar if you are DT1||A sweet incorrect! Sugar doesn’t need to be cut out completely from your diet if you are DT1, just eat it in moderation like anyone else. In fact – sugary drinks and dextrose tablets are the one thing that prevent DT1s going into a hypoglycemic coma. DT1s NEED sugar.|
|You are doomed to a life of ‘diabetic’ foods if you are DT1||Nope! Thankfully research and the treatment of DT1 has significantly advanced from the 80’s and 90’s. Not only are these products expensive, they apparently can give you the runs… So stick to the real stuff and count your carbs properly.|
|If you have DT1 you can’t play sport.||Sooooo badly wrong! Google ‘Famous sport stars with Diabetes Type 1’. You’ll discover a plethora of successful sporting giants. Sport is an extremely important part of living a healthy lifestyle for all of us so get out there and show the world what you can do. Nuff said.|
|You live a limited life with DT1||Wrong again! There is nothing you can’t do just because you have DT1. OK, you can’t be an astronaut or a pilot, this is true but for the rest it all comes down to personal choice. How limited your life will be is up to you, not the disease.|
|Diabetics die young||Dead wrong! Your life expectancy can be just fine so long as you diligently look after yourself, and avoid fast moving buses.|
|DT1 is curable||Sadly no. This isn’t actually a myth, just something lots of people aren’t aware of and any chance I get I will use it to remind us all that DT1 sufferers will always be DT1 until we find a cure. #weneedacure|
Millions of children with DT1 go to school every day without any serious problems…but there are a few vital bits of information you can share with your child’s school to help them through each day.
The following information is pulled together from my own personal experience when trying to get my son established in school for the first time. In our case, Noah was 4 years old which presented additional problems because any 4 year old is still fairly highly dependent on adults for a number of things, however a diabetic 4 year old has added dependencies. Furthermore, my experience is limited to the schooling system in The Netherlands where sadly we do not have trained medical staff on site like a School Nurse. This means that not all of the following could apply to your situation but I hope some of it helps.
Before your child starts his or her first day at school make at least one appointment with the following people (preferably all together to save you time and ensure everyone gets the same message and information from you):
1- Your child’s regular teacher(s)
2- The school nurse (if there is one)
3- The school coordinator
4- The Head Teacher
5- The designated backup teacher(s)
Feel free to print the following and give it to your school.
 What is Diabetes Type 1 (DT1)?
Diabetes Type 1 (DT1) is a life-threatening disease in which the body’s ability to produce or respond to the hormone insulin is impaired, resulting in abnormal metabolism of carbohydrates and elevated levels of glucose in the blood. When there is too much insulin or too little glucose in the body there is a risk of a hypo. A hypo requires quick action to prevent immediate and potentially serious health problems. When there is too little insulin or too much glucose in the body there is a risk of a hyper. A hyper requires immediate attention to prevent long term health issues in the patient. Both a hypo and a hyper state in the body make the patient feel extremely horrible. See Cheat Sheet for symptoms here.
 Needles or Pump?
Someone with DT1 is unable to make insulin and therefore it needs to be manually administered. There are two ways to do this:
- Using an insulin pen with a small needle at the top which needs changing after every use
- Using an insulin pump which pushes insulin into the blood stream through a cannula inserted into the body (this is done at home)
The insulin pump uses a mixture of the following techniques to provide insulin:
- Basal – this is a continuous, low dosage of insulin into the body to help regulate between meal times.
- Bolus – this is an additional boost of insulin before a meal.
A child who wears a pump might need to deactivate the pump before a gym or sport session.
 Measuring blood glucose levels
To measure the amount of glucose in blood (for example before a meal, or to check if there is too much/too little insulin in the body) a diabetic child (or their teacher if the child is too young) needs to test the blood. To do this a small drop of blood is taken using a finger prick pen. The drop of blood is then placed onto a small strip that has been inserted into a glucose monitor. If the child is using an insulin pump, the result of the blood test will be sent via Bluetooth to the pump automatically.
 What is a good blood glucose level?
Someone who isn’t diabetic will always be between 4.0 and 10.0. A diabetic on the other hand can easily go over or below this.
- Below 4.0 is a hypo
- Above 10.0 is hyper
Both require different actions to fix the glucose level in the blood and try to return it to normal.
 What affects glucose levels in blood?
LOTS of things affect the level of glucose in a diabetic’s body – not just food. Growth hormones which are of course common in children can affect the levels. Also feelings – pay additional attention to diabetic children when they are excited, scared, angry or stressed as their glucose levels will likely be affected by these strong emotions. Adrenalin also affects blood glucose levels so running in the playground, sport lessons, sport days etc. require extra attention too.
 Exchange information daily
When a child arrives in class the teacher and parent should always have a brief exchange of information. Has the child slept well? Are there any concerns about their general health? Have they eaten breakfast well? Likewise when the child goes home, the same kind of information needs to be shared. Did the child eat all their lunch? Was there a sport lesson that day? Are there any remarks to make about the (sometimes temperamental) pump functionality? Teachers and parents who exchange information and work as a team always have better results for the child’s health than those who don’t.
 If you are going to do it – do it RIGHT
Taking a finger prick blood test is incredibly quick and simple. The results of the test will determine the next step in caring for the child so it is also one of the most important parts to get RIGHT.
- ALWAYS wash hands before a test. A single drop of juice or a cookie crumb can give you hugely incorrect results, leading to incorrect treatment.
- BUT if for some reason it is not possible to wash the hands then wipe the first drop of blood away. The next drop of blood will be ‘cleaner’.
 A wise man takes care of his tools
Diabetics need to carry a lot of ‘tools’ every day and everywhere. Kids are prone to throwing school bags around in class or sitting on them in the playground. NOT A GOOD IDEA.
Likewise, their ‘tools’ do not like extremely warm or cold conditions. During summer try to keep insulin in the fridge door (not the fridge itself where it is too cold) and in winter do not let insulin sit near the heaters.
 Failing to plan is a plan to fail
During your pre-meetings with the school it is a good idea to decide on important issues like:
- When will you organize training for them to learn how to take finger prick tests and administer insulin?
- How often will you meet to update them on the care of your child?
- Who is in the primary care team? I.e. which group of people have received all the information and training required to keep your child safe during school hours?
- Who is in the secondary care team? I.e. who will look after and teach your child when the usual teacher is sick? Are they fully trained? Do they need regular update training sessions?
- How will the school ensure every teacher knows how to spot when your child is having a hypo and who to contact for help?
- What are the protocols when extra treats are brought into class (like on a birthday)?
- Are there any times during school hours when your child might be unsupervised by a trained adult, and if so, how will this be handled?
- If there is a school emergency (fire etc.) does the primary care team know which diabetes equipment to take to the safety point with them and where to find it quickly?
 And finally….trust
Trust in the child, even if they are only 4 years old to communicate when something is wrong. Hypos and hypers make a child feel terrible and you will either see it or they will tell you how they feel. Listen carefully to the young children especially who still find it difficult to articulate feelings. Trust in your own instincts to be more observant in the class for a diabetic child – and if in any doubt always do a finger prick test.
And never, ever forget:
IF THE CHILD BECOMES UNWELL IT IS ALMOST ALWAYS A HYPO:
– GIVE THE CHILD DEXTROSE OR A SUGARY DRINK
– IF THE CHILD CANNOT EAT OR DRINK – CALL THE EMERGENCY SERVICES AND INFORM THEM YOU HAVE A DIABETIC CHILD WHO IS UNRESPONSIVE.
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 DT1?
The quick answer: who knows?
The longer answer is multifaceted. There is no DT1 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 DT1. 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 DT1 by eating the wrong foods. DT1 is not contagious. Sometimes life just chucks a pile of crap your way and it’s your choice whether you sink or swim.
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. DT1 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.
You 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 DT1 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.
DT1 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 DT1 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
This is a sore point for many diabetics and parents of diabetics. It links strongly to our lack of knowledge on this prevalent disease. We can’t blame people for not knowing, I really didn’t have a clue before Noah was diagnosed, I thought I did but I didn’t. I have found the best way to deal with this is simply to help educate and inform as I go along. I am still learning too so that gives you some idea how complex a disease it really is.
But first things first…
Diabetes Type 1 is NOT the same as your Grandmothers.
Honest. Let me explain why.
There are two main types of Diabetes so let me lay them down for you plain and simple (this is not forgetting gestational diabetes and other sorts of rarer forms. Read more on these types here):
|The pancreas has STOPPED making insulin||The pancreas is unable to produce ENOUGH insulin|
|Usually appears in people under the age of 40. Early onset diabetes is often referred to as juvenile diabetes||Usually appears in people over the age of 40|
|Accounts for 10% of people with diabetes||Accounts for 90% of people with diabetes|
|Nobody knows why the pancreas stops working but SCIENCE tells us it has nothing to do with diet or lifestyle||Is often age-related or lifestyle/diet related|
|The only treatment is injecting insulin into the body through needles or with an insulin pump||Is treated with a healthy diet, physical activity and (often but not always) medication and/or insulin in the form of pills|
|It is not curable||It is curable|
This means that even though they share the same name; Diabetes, they are in fact almost two entirely different diseases with absolutely entirely different treatments and outlooks. This also means that Type 2 is not a milder form of Diabetes – actually all forms of this disease suck.