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! 🙂 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, 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, Education, Health, T1D

Myth Busting

Myth

Fact

You get Diabetes Type 1 (T1D) 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 T1D A sweet incorrect! Sugar doesn’t need to be cut out completely from your diet if you are T1D, just eat it in moderation like anyone else. In fact – sugary drinks and dextrose tablets are the one thing that prevent T1Ds going into a hypoglycemic coma. T1Ds NEED sugar.
You are doomed to a life of ‘diabetic’ foods if you are T1D Nope! Thankfully research and the treatment of T1D 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 T1D 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 T1D Wrong again! There is nothing you can’t do just because you have T1D. 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.
T1D 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 T1D sufferers will always be T1D until we find a cure. #weneedacure
Diabetes, Education, Health, T1D

10 things your child’s school needs to know about Diabetes Type 1

Millions of children with T1D 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.

IMPORTANT ADVICE:
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.

[1] What is Diabetes Type 1 (T1D)?

diabetes-1270346_960_720Diabetes Type 1 (T1D) 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.

[2] Needles or Pump?

Someone with T1D is unable to make insulin and therefore it needs to be manually administered. There are two ways to do this:

  1. Using an insulin pen with a small needle at the top which needs changing after every use
  2. 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.

[3] 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.

[4] 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.

[5] 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.

[6] Exchange information daily

minions-363019_960_720When 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.

[7] 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’.

[8] A wise man takes care of his tools

diabetes-blood-sugar-diabetic-medicine-46173Diabetics 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.

[9] 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?

[10] And finally….trust

trust-1418901_960_720Trust 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.

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.