The education that saved my daughter’s life

My daughter was 11 months old. For the preceding 3 months she had lost a lot of weight, so much so that the health visitor at the community centre (in Brighton, UK) where I took her for weighing once a month recommended that she be seen by a doctor. But when I took her to our doctor, she just said ‘Let’s keep an eye on it’.

In addition to losing weight, my daughter started drinking loads of water, wetting her nappy unusually frequently and instead of being her usual little sweetheart self she became ratty and miserable and she cried a lot.

My daughter around the time of diagnosis

My husband and I started to think something was wrong when it got to the point that she would finish a beaker of water in one sitting and her nappies were completely saturated one hour after she had gone to bed. One evening my husband and I discussed what the cause of the drinking and peeing was: The heat wave that we were experiencing? Salt in the food that we didn’t know was there? And then it hit me.

I remembered that at secondary school during a health education lesson the teacher had talked about Type 1 diabetes. I somehow recalled that the symptoms listed were excessive drinking and peeing.

So, I booked an appointment for her to see the doctor the following day.

At the doctor’s surgery I voiced my concerns about Type 1 diabetes. The GP didn’t take it seriously and asked us to come back in three days time if my daughter was still feeling ‘poorly’.

But having Googled Type 1 diabetes before the appointment, I was prepared. More specifically, I had collected a urine sample from my daughter beforehand and I asked the doctor to dip the urine to check whether there was sugar in it (indicating diabetes).

The doctor dipped it, re-dipped it, and turned to me to ask if there was any chance that the Tupperware box I brought the urine sample in was contaminated with sugar. In-between tears all I could was whisper: ‘No.’

The doctor rang the hospital, where they urged us to drive over immediately. But before we left for that hospital visit that confirmed that my daughter was indeed Type 1 diabetic the GP said:

‘Lucky you had the urine sample with you’.

Yes. My daughter was lucky. She was ‘lucky’ because a teacher in Finland had spent 5 minutes talking about Type 1 diabetes and I vaguely remembered what the symptoms were. Whereas, shockingly, the doctor in the UK didn’t recognise the typical symptoms of Type 1 diabetes that my daughter was displaying: weight loss, excessive thirst, excessive peeing and tiredness, even when these were specifically spelled out to her.

Worse still, I don’t think this GP was a one-off case. Most people in the UK, including many GPs, seem to be oblivious to these symptoms, even though the UK has the fifth highest number of Type 1 diabetics in the world per capita (approx. 32,000 Type 1 diabetic children under the age of 14 years) and has about 2000 people diagnosed with Type 1 diabetes annually (ref.). Instead, it seems that GPs, the press, and thus also the general population in the UK are more aware of the symptoms of Type 2 diabetes (a less dangerous condition, that often affects people over the age of 40).

Had I not remembered that health education session from my Finnish high school, the chances are that, similarly to 1 in 4 Type 1 diabetic children in the UK whose diabetes is not diagnosed in time, my daughter would have collapsed, convulsed and needed serious and urgent hospital care. After all, when we got to the hospital my daughter’s blood sugar level was so high that the hospital’s blood sugar meter could not read it (> 42 mmol/L). Such high blood glucose level indicates that she had a huge insulin deficiency and as a consequence she was likely to start developing something called diabetic ketoacidosis, an extremely dangerous complication of Type 1 diabetes which, if left untreated, will lead to coma, organ failure or even death in a matter of hours. The thought of us following the GP’s suggestion to go back home for another three days is a thought I don’t really want to think about.

My daughter after diagnosis (what you can see sticking ou under her top is a tube that connects her insulin pump to a cannula on her leg, she has been wearing it 24-7-365 for the past 4 years).

We were lucky, but many parents whose child is diagnosed with Type 1 diabetes go through the frightening experience of diabetic ketoacidosis, and even worse, some parents lose their child because of it. These medical emergencies could be relatively easily avoided by educating people (and GPs) about Type 1 diabetes.

So, to contribute to many Type 1 diabetics’ and/or their parents’ attempts to educate people, below I have written a short description of Type 1 diabetes and added a picture of the four most common symptoms of Type 1 diabetes (taken from diabetes.co.uk).  If your high school health education syllabus did not include Type 1 diabetes, I would recommend you familiarise yourself with the symptoms and make your friends aware of them as well.

 

Type 1 diabetes in a nutshell

Type 1 diabetes is not the same as Type 2 diabetes, the latter of these being the one that most of us have heard about in the news, and is most commonly associated with lifestyle choices. Type 1 diabetes is an autoimmune illness whose onset is usually in childhood, puberty or early adulthood, but people of any age can develop it. Importantly, the amount of sugar/fat in one’s diet or the patient’s weight or activity level is not related to the onset of Type 1 diabetes.

In Type 1 diabetes, like in other autoimmune deceases, for some reason white cells attack the person’s other cells. In the case of Type 1 diabetes, the cells that have been attacked and destroyed are the Beta cells in the pancreas that produce insulin, a vital hormone that enables glucose (sugar, carbs) being transferred from blood stream to the cells as energy. Without insulin a person will die in a matter of days. Thus, Type 1 diabetics need to inject insulin every day (in fact many times a day). No diet or herbal remedy will take away the need of insulin in these patients.

Type 1 diabetes – Typical symptoms pre diagnosis

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You can read more about our life as a family with a young diabetic child here, here and here.

My daughter

When your child realizes that she has a serious, long-term, illness

My 4-year old daughter is sitting on a wooden stool in the kitchen eating a mandarin while I’m doing the dishes. All of a sudden with a drained voice she says:

She: Mummy, why do I have this?

Me: Have what?

She: Why was I born like this? (she points at her insulin pump) Why do I have diabetes?

I try not to look at her so that she wouldn’t be able to see the tears that her questions brought to my eyes and I say:

Me: Darling, there’s nothing you or anyone did wrong. No-one knows why the ‘police’ cells in your body that usually fight baddies, attacked your own cells that used to produce insulin.

I can’t help but think that no child should go through life of constant finger prick tests, injections, feeling terrible when their blood sugar level is too low or off the chart too high, and that no parent should live with the constant worry and stress that with some relatively easy mistakes or slight miscalculations they could potentially seriously damage their child’s health, or worse.

Our daughter having Type 1 diabetes didn’t used to bother her too much until now. She was diagnosed at the age of 11 months and so she doesn’t remember life without diabetes. To her, carrying an insulin pump around her waist day and night, having several finger prick tests every day, having frequent cannula changes and insulin injections, taking a stash of emergency sugar reserves with her wherever she goes and putting food in her mouth only if an adult has calculated the carb content of that food has been what she’s conceived as being ‘normal’ and has with a child’s egocentric worldview assumed that that’s the life that all children have.

Now that she’s nearly 5-years old and goes to a kindergarten where she shares daily routines with other children, she’s started to realize the differences between her and her classmates. She’s noticed that in addition to the obvious, like her insulin pump size of a mobile phone hanging of her waist feeding insulin in her leg/buttock via a cannula, she, unlike her classmates, can’t snack on piles of biscuits and sweets at or after school. She cannot go on play dates on her own like her brother can (not until she is older anyway). Neither will it be easy for her to go for sleepovers at other children’s homes when the time comes.

It doesn’t help that Type 1 diabetes is extremely rare in Japan, since it makes her feel like she’s the only one who is different. Over here, in addition to our daughter, we don’t know anyone who has Type 1 diabetes. Well, actually we kind of know one person.

You see, a couple of weeks ago a piece of our daughter’s equipment had fallen out of her pocket during the recess time at school. The monitor, on which we rely 24-7, was damaged and disastrously we didn’t have a spare. To make things worse, we knew that the monitor is not licenced in Japan, and thus it would be impossible to find a new one in Japan. Our only option was to order a new monitor from England, but this meant that we’d have to live without this monitor at least for a week or two. An absolute nightmare situation for us, a situation which would have meant that she could not have gone to school (without me being with her in school every day) and that we would have to test her blood sugar level by taking a finger prick test every 60-90 minutes day and night until we got the new monitor. In a state of panic I sent an email to our daughter’s consultant at Osaka University Hospital and asked if by any chance he knew anywhere in Japan that we could buy this piece of equipment from. When he replied, he said that we would have to order a new one from abroad, but that his colleague, an adult Type 1 diabetic, had offered to lend us his own monitor (the same make and model as ours) until we’d get the new monitor from England! The little diabetic community that there is here in Osaka seems to be as supportive and altruistic as diabetic communities in England and Finland!

My son had overheard the conversation I had with my daughter in the kitchen and he comes to us and says:

He: Will she ever get better?

Me: I don’t know. I hope so. There is no cure at the moment…maybe there will be in 10 or 20 years time.

My daughter: I hope there is.

Me: That would be wonderful. But, you know, until then, we can live with diabetes, right?

When our daughter was first diagnosed we spent a lot of time at the Children’s hospital in Brighton and being there gave us some perspective on these types of things. Ultimately I think that everyone has their challenges, and my husband and I are just like every other parent, wanting our children to be as happy as possible whatever life throws at them. On that measure, I feel like we do a pretty good job and if you met our daughter I think you would agree.

 

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Type 1 diabetes is ‘juvenile diabetes’, i.e. a form of pancreatic malfunctioning whose onset takes place predominantly in infants or teenagers. Unlike Type 2 diabetes, body weight or the patients’ diet (in particular when it comes to eating stereotypically ‘unhealthy’ foods) prior to diagnosis has very little effect on the onset of Type 1 diabetes.

One of life’s little victories

I am sitting in the corner of a classroom observing a class of 4-year old Japanese (and Korean) children and our daughter get ready for the school day. It’s our daughter’s first day of (pre)school.

Our daughter started school about 10 days after the other children, and so the first thing the teacher does is to introduce her to the class. She pulls our daughter’s dress up to reveal underneath her insulin pump strapped around her waist. She instructs the class never to touch it. Our daughter smiles as the children innocently express curiosity towards a big grey lump under her arm (which is her Continuous Glucose Monitor). ‘It’s for her medicine too. You shouldn’t touch or pull it.’ the teacher says.

Not only is our daughter the only blond girl in her class, but she’s also the only child in her class – or in fact in the whole school – who has a disability. She has Type 1 diabetes.

Due to her disability, I will be spending many hours in that corner of that classroom. I (or my husband or our au pair) will not be at the school only for the morning of the first day, but we’ll be there all day every day for at least the next two weeks observing and instructing, and if necessary, intervening with our daughter’s care.

But that’s fine. I don’t mind. I’m over the moon that this school accepted our daughter as a student. You see, our daughter’s application was rejected in every other school we contacted. The view of all those schools was that their school was not a suitable place for our daughter, and to be honest, this was the initial view of our daughter’s current school as well. However, after a two-month-long email correspondence between us, the head of paediatrics at Osaka University Hospital, and the school, and two face-to-face meetings with the headmaster and teachers, we received an email telling us that they were willing to give it a go. And we were chuffed to bits.

We were chuffed mostly because we felt that our daughter (like other children) needs the company of children of her own age. Since moving to Japan, our daughter has mostly spent time at home with an au pair. She’s loved our au pairs and they’ve all loved her (she’s a little sweetheart), but due to her having been at home instead of a preschool/nursery, she hardly has any friends of her own age in Japan. So, when I observed from my classroom corner vantage point that another pupil came and held our daughter’s hand and escorted her to a rug on the floor for the story time, I was nearly in tears. (Perhaps they’ll become good friends, and for the first time in two years, we can throw a kids’ birthday party on our daughter’s next birthday.)

After having lived in England, where most schools/nurseries try to be inclusive and offer a place to children with all sorts of needs, I was oblivious to the kinds of battles some parents of children with extra physical, mental or medical needs have to fight. When we were in England, we didn’t really have any problems getting our daughter into a nursery (even though she has Type 1 diabetes).

At the age of 11 months our daughter started in a private nursery in Brighton, England. The nursery manager hardly flinched when we said that our daughter needs medical support during the nursery day and that a specialist diabetes nurse would have to come and train the staff for our daughter’s care. Several members of the staff completed the training and our daughter spent a happy 1 ½ years at that nursery (and then we moved to Japan).

Even though having a special needs child in your class might initially be a little scary, learning the care aspects of these children is usually nothing that a person with normal cognitive abilities could not learn after a few hours of hands-on practice, after all, thousands of parents (without prior medical training) learn these things.

I believe that in Japan state schools have to accept children with disabilities, but the general practice seems to be that children with ‘special needs’ (a) need to go to special schools or (b) if they go to a mainstream school they will have to have permanent one-to-one help. I think this is largely because Japanese society does not like risk-taking or mistakes being made (you might have seen important politicians and CEOs bellow and resign on prime time TV when they’ve made a mistake). Maybe because of this, not many people/schools want to put themselves on the line with children with extra care where mistakes are more likely than with ‘normal’ children.

Thus, the fact that this school was willing to take that risk with our daughter was great. And the first day at school made me feel confident that the staff would learn to cope with our daughter’s medical needs and it would all be fine, given that our daughter’s classroom teacher and the teaching assistant made the effort of absorbing the information about our daughter’s care, and when I needed to check our daughter’s blood sugars by a finger prick test, they were happy for me to check it in the presence of the other children (and did not make us hide in the toilets, an empty corridor or a broom cupboard). The PE teacher and his two teaching assistants were also fantastic and wanted to know every detail about everything – even about our daughter’s devices that they wouldn’t need to use. The teaching assistants that were managing recess time seemed positive and eager to learn how to use our daughter’s devices. And the headmaster popped his head through the classroom door at least twice during the school day to check that everything was going ok. He also came and had a chat with me at the end of the school day to discuss the day in more detail.

So, here I am sitting on the sofa with my laptop on my lap thinking back to the first school day and smiling. In the coming weeks and months, our daughter will make friends, learn some new academic and non-academic skills and feel like she’s just like everyone else. That’s exactly how her life should be.

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If you have been reading my blog you know that our daughter has Type 1 diabetes (you can find more info about Type 1 and our life with the condition for instance here and here and here).

But, in short, Type 1 diabetes is an autoimmune illness often diagnosed when the patient is an infant or a teenager (note that Type 2 diabetes is a different disease). In Type 1 diabetes, the patient’s pancreas can no longer produce insulin, an important hormone without which a person will die. This means that the patient or their caregiver will have to inject insulin with an insulin pen or with insulin pump, which administers insulin via a cannula. Because (due to various reasons) it can be difficult to estimate the correct amount of insulin administered, the patient or their caregiver needs to check the patient’s blood glucose level frequently to make sure that they have not had too much or too little insulin. This can be done by doing a finger prick blood test or by using a ‘blood free’ continuous glucose monitor which tracks the patients glucose levels via a sensor(cannula)+transmitter+receiver combination every 5 minutes. Our daughter is lucky to have an insulin pump and a glucose monitor, which means that monitoring and controlling our daughter’s blood sugar levels is relatively easy, although exhausting!

I fancy a little something…

 

I’m starting to think that our diet has changed since we moved to Japan – in particular when it comes to snack time. In England, our kids’ snacks usually consisted of vegetable sticks, houmous, cheese strings, and perhaps meatballs, frankfurters and nuts. In case you are wondering why our our snack time was (and is) so protein and fat heavy it might be useful to remind you that my daughter has Type 1 diabetes (sorry to repeat this for those that know already), which means that to achieve better blood sugar control we try to limit her intake of carbs while favouring protein and fat. As the photos below illustrate, our houmous and cheese string days are long gone (partly because we can’t find houmous and cheese strings in Japan).

Below are our typical snacks in our household here in Japan. Correct me if I am wrong, but I don’t think our 4-year old’s snacks are typical for 4-year old British or Finnish kids. I think when we return to England, we need to find a reliable source of raw and preserved octopus tentacles, bucket loads of fish roe, and dried fish.

What do you or your kids have as a snack? This is what we have:

 

Octopus

By the way, the abstract art that my daughter is making while devouring the octopus looks a little bit like a Rorschach test picture. Or do her scribblings just look like bugs…

 

Whitebait (baby fish)

         

 

 

Niboshi (i.e. dried fish)

 

A bowl of fish eggs

 

Butaman (Chinese pork bun).

 

Takoyaki (Japanese style octopus dumplings)

I think instead of a snack, this could be considered a meal. But we’re no sparrows!

 

Edamame (soy beans)

We eat these for breakfast, lunch and dinner pretty much every day, largely because (a) we all love them, and (b) the fact that they are low in carbs and high in protein means that they, like the above fish snacks, suit my Type 1 diabetic daughter’s diet well.

My students can’t contain themselves when in between lectures they see me heat up some frozen edamame at work. You see, edamame is a snack typically associated with beer-fuelled drinking sessions in the local bar. I think my students expect me to pull out a can of beer instead of cup of coffee with my mid-lecture break (sometimes I am tempted but I haven’t done it yet).

 

 

And finally,  please find a photo of my favourite snack below.

Pablo custard tarts

Those of you who think there is no pastry or cakes in Japan… think again. Even though most households in Japan do not have an oven, bakeries here are amazing! I know I should stick to the edamame but let’s face it that’s never going to happen.