Help! The sensor lets go!

Is the sensor letting go? You can solve it with a Dia-Band

While some people have to pull very hard to get their sensor off, with my son it was often loose (and out) within a week. That's why Kaio nowadays always wears a Dia-Band for sports and swimming. Or when he just feels like it. Or when the stickers start loosening. It works great. But we've also collected many other tips on how to keep that sensor in, you can read them below.

Why is the sensor letting go?

It depends on your skin type how well the adhesive in the band aid adheres to your skin. But also water and sweat have an influence on the adhesive layer. When you're using oil, body lotion or a very nourishing shower cream right before changing, sensors and infusion sets can be out again within an hour. So don't put anything on your skin right before replacing.

It may also help to clean your skin with an alcohol wipe before inserting the sensor. This will remove any dirt and grease, but do make sure it dries before inserting. For some people, alcohol wipes work counterproductive though, so it remains a matter of trial and error. We're all different.

Though this doesn't apply to Kaio yet, if you want to place the sensor on a hairy area, it can help to shave or wax the area beforehand. Hair prevents the sensor from sticking properly to the skin and it will loosen faster.

A tip Medtronic gave us is to make holes with a needle in their band aids before application. This seems to work well for Kaio.

Finally, the adhesion of the band aid can also be influenced by the place where you attach the sensor to your body; on some places clothes can rub along the band aid or there can be more tension on the skin. See if you can find any other places on your body and always consult when in doubt with your doctor or diabetes nurse.

Tip: if you still lose your sensor despite taking these measures, then call you supplier to check whether you are eligible for a replacement sensor. We always get one!

Kaio in zee met een Dia-Band armbandje om zijn sensor op zijn plaats te houden.
Kaio in zee met een Dia-Band armbandje om zijn sensor op zijn plaats te houden.

Skin Tac Wipes

Skin Tac Wipes are wipes with extra glue that form an interlayer between your skin and the band aid. The wipes are packed per piece. You open a package and put the glue on the area where you want to insert your sensor/infusion set. We always rip the package halfway through so we don't have to touch the sticky wipe.

For some, it seems to help to give loose edges a touch up with Skin Tac throughout the week, but for Kaio that doesn't work. Skin Tac is the most invisible option for reinforcement, but unfortunately for many people Skin Tac alone is just not enough.

Price per box (50 pieces): about 20 euros (only reimbursed in some cases; ask your supplier for more information. Sometimes they'll be reimbursed for your infusion set, but not for your sensor. If you use both then order it for your infusion set ;-). The wipes can be found at almost all equipment suppliers and sometimes also at a drugstore or pharmacy.

Cavilon Spray

In warm weather, your skin can be extremely irritated by the band aid. For this we use Cavilon spray. Cavilon barrier film is a non-sticking skin protector that provides a transparent barrier layer on the skin. With this you prevent irritation and protect the skin from damage caused by the band aid. In addition, Cavilon reinforces the adhesion of the tape. Cavilon provides up to 72 hours of protection, is alcohol-free and does not feel greasy.

Price per piece: around 13,95 euro. Sometimes available from medical suppliers, often at pharmacies and drugstores. Usually not reimbursed.

Fixomull Stretch

This white, flexible tape can be bought on a roll of two or ten meters at the pharmacy and is of the same soft material as most infusion band aids. For Kaio, it works perfectly to strengthen his sensor. I first draw the sensor and then the band aid edge with another edge around it from 1 to 1.5 cm extra. Then cut out the shape of the sensor. Sometimes we also just use a piece to stick loose edges together. That works great.

Price per piece (10cm x 10m): 17,95 euro per box (about 140 crafts) or 10cm x 2m for about 7 euro per box (about 28 handicrafts). Sometimes available from suppliers, often at pharmacies and drugstores. Usually not reimbursed.

Opsite Flexigrid

Opsite Flexigrid is a transparent, self-adhesive film that is used to cover small wounds. It acts as a second skin or is used for fixation. The film is waterproof and individually packaged. Because it is also flexible, it can easily cover your sensor. Also you can first stick the foil on your skin and then put your sensor/infusion/Omnipod on top. This can also be useful for skin allergies. The foil is available in 10×12 centimetres or 6×7 centimetres (depending on how big your sensor is).

Box of 100 pieces with a value of 60 euro is sometimes reimbursed.

Tegaderm

This bandage is a thin, transparent film, similar to the Opsite Flexigrid and it is latex-free. You can tape it over your sensor, or you can choose to put the film on your skin first and then stick the sensor on it (this is also a good option if you have sensitive skin and/or some skin irritation through your sensor/infusion/Omnipod). Tegaderm is available in 4,4×4,4 cm and in 6×7 cm.

Box of 100 pieces with a value of 85 euro. Available at many pharmacies, sometimes reimbursed.

Band aids and sport tape die voorkomen dat je sensor los komt

There are many other types of tape to be used: elastic sports tape (Kinesio or Cure tape) or Leukotape can also help with the reinforcement and you can even buy it in a nice colour (if that's what you like). If, in addition to bright colours, you also like a figure and don't want to do crafts yourself; there are several web shops for fixatape. in colours and figures.

A roll of Leukotape or Kinesiotape costs about 6 euros. You can buy it at drugstores and pharmacies.

And how do you get all that extra glue off?

A cotton pad with a little bit of water and baby oil is soft on your skin and removes all glue residues. One bottle of baby oil can be bought for around 2 euros.

School and diabetes

When my son had just received his diagnosis, it was so hard to leave him at school... Would he get the care he needs? Could I hand over his care to someone else? Worries are normal and understandable. Fact is every child with diabetes should be able to go to school carefree, but for many children with diabetes this is not happening. 

Give information

It can be scary for school, student and parents alike if a child has been diagnosed with diabetes. Everyone has their own questions. What does that even mean, diabetes? How do you ensure that all teachers know what a student with diabetes needs to function properly? Who's the first point of contact? What rules are there for extra guidance or adjustments? Many primary schools also never had a student with diabetes at school. But from experience we know that diabetes care at school can easily be integrated into the daily school routine.

It is very important to properly arrange the diabetes care at school Every child is different and each school has its own way of arranging care. Sometimes you can make clear agreements quickly. Other times it's more complicated. But as a parent, you play a very important role in explaining what diabetes is and what your child with diabetes needs from school. If your child has been diagnosed with diabetes, step 1 is to provide school and fellow students with information.

There are several tools for this:

  • For support check out this website full of tips and tools about diabetes at school.
  • Some diabetes centres organize information sessions for teachers. During these free meetings, teachers receive basic information about diabetes and its treatment. They also discuss practical matters such as treats, sports, school trips, etc.
  • A lecture at school can give fellow students extra information.
  • On YouTube are several children's movies about diabetes.

Rights

In Holland every school is obliged to investigate what support is needed for a student with diabetes and -within the possibilities of the school- also to offer it. Students with diabetes cannot be rejected. Find out what rights your country has for diabetes patients.

It still happens regularly that schools - such as ours, unfortunately- exclude all care for students with diabetes in advance for fear of liability or with reference to their medical protocol. In Holland that is not legally allowed according to the Institute of Human Rights. Find out what your rights are in your own country.

Diabetes and school results

This is important to know. Diabetes IS going to have an impact on school results, so make sure you arrange things well in advance. Now I discovered this a little late, unfortunately. I had read that diabetes could affect school results, but after Kaio's first half year of diabetes he received a high school advice, so I thought things were just fine. Well, they were not. When his school advice came at the end of this school year, it had dropped dramatically. And mainly because of a lack of focus in the classroom.

Since then I have been reading and discovered that diabetes can directly affect a child's ability to learn and concentrate. This has to do with fluctuating blood glucose levels. Whether it is too low or too high blood glucose values reduce the ability to concentrate, the memory, the speed of thought and the planning, organisational and cognitive skills. Because of this your child can get unexpectedly bad results during a test or sometimes have trouble to stay on top of things. In addition, when under stress for tests, adrenaline is released which increases the blood glucose, which may cause your child to get a hyper.

Rights

In Holland under The Equal Treatment Act (Wet gelijke behandeling op grond van handicap/chronische ziekte) you can ask for an effective adjustment, such as extra time for a test or exam for your child. Try to find out whether your country has a similar law.

Make sure you arrange it well. Your diabetes centre may also be able to give you a standard letter about diabetes, blood sugar levels and how it can affect school results, which you can take to school to discuss what is possible.

By now I have made adjustments at school, such as the agreement that Kaio will check his blood sugar right before each test and write it at the top of his test. If his blood sugar is not good, he gets extra time to get it back to normal. I also hope his teacher now realizes that a lack of focus is not unwillingness, but due to his illness. I hope this will bring his results back up to what I know he is capable of. If you have any tips, I'd love to hear them.

So make sure you arrange it well at school!

All studies show how important school is. But you have to be able to arrange your diabetes at school. And young children should be helped. Controlling diabetes means continuously adjusting, also at school - especially at school. Because that's where your performance suffers from hypo's, hypers and fluctuations. Good arrangement is of enormous importance to move forward in school AND later on!

Diabetes and school results

School and diabetes remain a difficult combination for us. The first (and only) reaction of the school director after Kaio came back from the hospital with type 1 diabetes was: 'We're not going to do anything about it'. He meant medical procedures. If he needed those, I'd have to come to school myself or the school would be liable. You know, a little more understanding and compassion would have been nice. For us, the ground beneath our feet had just fallen away. Thankfully Kaio had a great teacher who helped him a lot. Now I had read somewhere that diabetes could affect his school results, but at the end of the school year, Kaio got high grades so I thought things were going to be okay.

Well, they weren't. Because the new school year was also the end of Kaio's honeymoon phase. Before I never understood this name - honeymoon phase. Well, I do now. His blood sugar became a roller coaster. Luckily Kaio got the newest Medtronic pump - 670 g - in January and from March the Guardian Link 3 sensor. In auto mode, he finally came into balance. But then came his high school advice, and his level had dropped dramatically. Not that his grades were low - mainly because of a lack of focus in class.

Sometimes that's so hard. The misunderstandings. The 'outside world' that has no idea how Kaio feels after his broken nights, during a hypo (according to Kaio it's as if his soul is pulled out of his body), how he has a head full of syrup at a hyper. And still, he works so hard. Maybe it's a bit late, but only now have I started to study the effect of diabetes on school results.

A survey in Sweden has found what type 1 diabetes does to children's school performance and education. On average, children with diabetes (5,159 who received diabetes between 1977 and 2000 and 1,330,968 children without diabetes) did score a little worse than their peers. Especially in more complex subjects such as a foreign language and arithmetic/mathematics, the difference was much greater. And arithmetic is exactly what Kaio is having a challenge with right now. He's usually high when he has to do it and with a 'head full of syrup' it just doesn't work.

Nou is dit onderzoek in Zweden aanleiding geweest voor een grote actie om meer bekendheid en aandacht voor diabetes op school te krijgen. Het was nauwelijks bekend dat te hoge, te lage en schommelende waardes een nadelig effect op concentratie, gedrag en schoolresultaat konden hebben. En volgens mij is het dat hier nog steeds niet, terwijl er heel veel verband is tussen diabetes en schoolresultaten. Al schijnt dat onderwerp dankzij een aantal ouders en organisaties enkele jaren terug ook in Nederland op de agenda te zijn gekomen. 

Diabetologia contains an article with the title ‘Why childhood-onset type 1 diabetes impacts labour market outcomes’. This is striking because the title already indicates that the question is not whether diabetes can influence your later life and work, but goes a step further: Yes, there is an effect and this article describes why that happens and what the consequences can be. Is that a big effect? What are the consequences? What can you do about it? Doesn't that have much to do with background and learning opportunities? And why is school so important? This is discussed in the blog below:

https://diabeter.nl/nl/over-diabeter/nieuws/diabetes-type-1-van-invloed-op-latere-werk-en-inko/

By now, we've had a talk at school and arranged that Kaio will measure his blood sugar level before all his tests and write it on top of his test. If his blood sugar's not right, he'll get 15 minutes more time. With these measures - and now that he is better in balance thanks to the pump and sensor - I really do hope that the coming school year will be a better depiction of his potential. If anyone has good tips, I'd love to hear from you!

Love,

Masha

How do you recognize (type 1) diabetes?

  • Extreme thirst
  • Extreme fatigue
  • Suddenly significant weight loss
  • The need to urinate often
  • Sudden change of sight 
  • Nausea
  • Increased appetite
  • Drowsiness, lethargy
  • Heavy, difficult breathing
  • Dazedness, unconsciousness
  • Fungal infections of the skin and/or pubic area
  • Breath that smells fruity, sweet or like wine

Do you recognize the above symptoms and are you especially thirsty (and not for water but for sugary drinks - Kaio wanted to drink litres of fresh orange juice), tired and do you have weight loss? Then make an appointment with your doctor to measure your blood glucose level. This can be done with a simple finger prick.

Do you have type 1 diabetes (T1D) or type 2 diabetes (T2D)?  


The above symptoms apply to both T1D and T2D. Usually the process with T1D is faster and more sudden. Elderly people more often have type 2 and young people more often have type 1, but this is not always the case.

What is diabetes?

Diabetes is a condition in which the body is unable to convert glucose in the blood into fuel for the cells. Without this fuel, your body cannot function.

There are different forms of diabetes. The best known are type 1 and type 2 diabetes.

How does type 1 diabetes develop?

Type 1 diabetes (T1D) is an autoimmune disease. That is, the disease is caused by a body's own immune response. The immune system attacks the insulin-producing cells in the pancreas. Until recently, it was thought that this reaction was caused by a fault in the immune system, but recent research has shown that the immune system comes into action because the insulin-producing beta cells produce a protein that is not accepted.

What does it mean to have type 1 diabetes?

If you have T1D, you'll have it for life. Your body doesn't make insulin anymore. Insulin is an important hormone, which ensures that the sugars in your blood are converted into fuel for your cells. Every function of your body needs this fuel. Living without insulin is not possible. Someone with T1D must therefore have several doses of insulin a day. This can be done with injections, or with a continuous drip. You should also regularly measure your blood glucose levels. This can be done by a finger prick. A special device then measures the glucose value in a drop of blood. A relatively new development is the 'sensor'. It's a device that measures the glucose value every 5 minutes, the result can then be read off on a receiver, or even on your phone. Unfortunately, only for a small group of people sensors are reimbursed by their insurance company.

High and low

It's important to keep your blood sugar as stable as possible. Your blood sugar can be too high or too low. High blood sugar levels are also called hypers (completely: hyperglycaemia). High blood sugar levels increase the risk of serious complications over the long term, but you can also get diabetic ketoacidosis from it. That's an acute and life-threatening complication of diabetes.

Low blood sugar levels can also be life-threatening. Hypoglycaemia or hypo's can cause you to pass out, go into a coma or even die in extreme cases. If you have low blood sugar, it is important to eat fast sugars as soon as possible.

It is therefore very important to keep your values between 4 and 8, but that's very difficult. Not only does the insulin have an effect, but also all the carbohydrates and even proteins you eat, how much you exercise, whether you are sick or there fluctuations in your hormones. Even the temperature can affect your blood sugar.

Carbohydrates

In the past, people thought (and unfortunately some people still do) that someone with diabetes shouldn't eat any sugar at all. In reality, people with type 1 diabetes can eat anything. It is just important to calculate the correct insulin dose based on the carbohydrates in the food and the blood sugar level at that moment. Carbohydrates include sugars, fibres and starch. So they're in a lot of food products. Fortunately, it is usually stated on the package how many carbohydrates there are in your snack, but when you're out to dinner, it gets a lot harder.

Complications

We prefer not to talk about it, because it's very confronting, but with type 1 diabetes your risk of serious complications is high. The most common complications are damage to eyes, kidneys, the cardiovascular system and the nerves in the hands and feet. In addition, things like 'frozen shoulder' and other joint complaints are also common. Gastroparesis can also occur. Gastroparesis ensures that your digestion is slower than usual, which leads to a delayed intake of nutrients. This can also result in disturbed glucose values.

Can Type 1 Diabetes be cured?

There is no cure for T1D yet. However, life is becoming easier and more 'normal' thanks to new smart tools that allow people with T1D to reach virtually 'normal' sugar levels. Think of the newest pumps and smaller needles for the insulin pens. As a result, the quality of life improves and the risk of complications is much smaller than, for example, 25 years ago. The expectation is that healing of T1D is still possible within this generation. We hope that our donations will help to achieve this!